• Tue
    13
    Jun
    2023
    Thu
    15
    Jun
    2023
    Nottingham, UK

    Save the date! We are pleased to announce that the 11th International Lymphoedema Framework Conference will take place on 13 – 15 June 2023 in Nottingham, UK. The venue is the East Midlands Conference Centre, University of Nottingham.

    The conference is organised in collaboration with the Welsh framework, Lymphoedema Wales.

    An inspiring scientific programme is being prepared with plenty of possibilities for gaining new knowledge and sharing experiences about lymphoedema and related disorders, and for networking with health care professionals and patients from all over the world.

    More information will soon be available on the website.

  • Wed
    15
    Mar
    2023
    Sat
    18
    Mar
    2023
    Berlin, Germany

    EJP RD is pleased to announce that the next edition of the 7th RE(ACT) Congress and 5th IRDiRC Conference will be held in person in Berlin, Germany from March 15th – 18th, 2023.

    The joint event “RE(ACT) Congress and IRDiRC Conference 2023” aims to bring together scientific leaders and experts and young scientists from various breakthrough scientific fields to present cutting-edge research, exchange ideas, and discuss rare diseases research policies. Patients and patient organizations committed to research will also be in attendance to share their experiences and perspectives.

    The RE(ACT) Congress and IRDiRC Conference 2023 represents an exciting program with outstanding speakers and an in-person event with multiple ways of networking!

    We look forward to welcoming you to Berlin in March 2023. More information here: https://www.ejprarediseases.org/save-the-date-react-congress-and-irdirc-conference-2023/

  • Tue
    31
    Jan
    2023
    Fri
    03
    Feb
    2023
    Brussels, Belgium

    V.A. Cure network are pleased to invite you to VAC 2023, our international conference on Vascular Anomalies, which will be held in Brussels from 31 January to 3 February 2023. The conference is organized by the V.A. Cure network, an EU-MSCA-ITN project that performs vascular research with the aim to find new treatment strategies for vascular anomalies.

    VAC 2023 is about the latest developments in basic, translational and clinical research in vascular anomalies. With lectures by top experts in these fields and many opportunities for networking, it will be a unique occasion to exchange knowledge among key players in the chain from fundamental research to clinical applications.

    We hope to see you in Brussels!

    More information and registration: https://vacure-conference.net/

  • Thu
    01
    Dec
    2022
    Fri
    02
    Dec
    2022
    Paris, France

    The International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD) are jointly organizing a two-day conference on clinical research networks (CRNs) for rare diseases, which will take place on December 1 and 2.

    The objective of this conference is to gather experts from different continents to increase mutual knowledge on CRNs structure, activities and identify pathways to stimulate collaboration and interoperability of these networks.  

    It is not possible anymore to register for in-person participation. To register for online participation, please complete this registration form

    Find more information here.

  • Thu
    01
    Dec
    2022

    The European Joint Programme on Rare Diseases (EJP RD) Networking Support Scheme (NSS) is now open!

    The scheme will provide financial support to applicants for fostering organization of workshops or conferences for new research networks or existing/expanding research networks to strengthen collaborations and to enable exchange of knowledge.

    Eligible applicants to apply for the NSS are health care professionals, researchers and patient advocacy organizations from the following countries involved in the EJP RD (in alphabetical order):

    Armenia*, Austria, Belgium, Bulgaria*, Croatia*, Czech Republic*, Denmark, Estonia*, Finland, France, Germany, Georgia*, Greece, Hungary*, Ireland, Israel, Italy, Latvia*, Lithuania*, Luxembourg, Malta*, Norway, Poland*, Portugal, Romania*, Serbia*, Slovakia*, Slovenia*, Spain, Sweden, Switzerland, The Netherlands, Türkiye*, United Kingdom.

    The countries that are indicated with an asterisk (*) are usually seen as underrepresented countries.

    At least one Principal applicant and two co-applicants from three different countries mentioned above have to apply together for support of a Networking event.

    Maximum budget for networking event: € 30,000

    The last collection date for the Networking Support Scheme in EJP-RD is December 1, 2022 at 14.00 (CET).

    All information, including the call documents, can be found on the EJP-RD website here.

  • Mon
    28
    Nov
    2022
    5.00PM-6.30PMOnline

    The VASCERN HTAD-WG Monthly Meeting will take place on November 28th, 2022 at 5.00 pm (Paris time).

  • Fri
    25
    Nov
    2022
    8.00AM-9.00AMOnline

    The VASCERN HHT-WG Monthly Meeting will take place on November 25th, 2022 at 8.00 am (Paris time).

  • Mon
    21
    Nov
    2022
    5:30PM-6.30PMOnline

    The VASCERN PPL-WG Monthly Meeting will take place on November 21st, 2022 at 5.30 pm (Paris time).

  • Thu
    17
    Nov
    2022
    5:30PM-6.30PMOnline

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on November 17th, 2022 at 5.30 pm (Paris time).

  • Wed
    16
    Nov
    2022
    4.00PM-5.00PMOnline

    The VASCERN VASCA-WG Monthly Meeting will take place on November 16th, 2022 at 4.00 pm (Paris time).

  • Mon
    14
    Nov
    2022
    Thu
    17
    Nov
    2022
    Online

    The EURORDIS All ePAG Meeting will take place from November 14 to 17, 2022.

    This will be a 4-day online event with 5 sessions. There are 2 networking sessions and 3 sessions dedicated to exploring how and why to listen to and represent your community, each lasting an hour. These sessions were inspired by a practical guide co-developed by EURORDIS and the patient community.

    You can attend as many sessions as you want, and pre-registration is not required.

    Access meeting links here.

    See you there!

  • Sun
    13
    Nov
    2022

    The European Joint Programme on Rare Diseases (EJP RD) is glad to announce that the last round for the Research Mobility Fellowships funding opportunity will open on October, 3rd, 2022. The call aims to support PhD students, postdocs, and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.

    The exchange can be carried out (1) within the same ERN (Full Members and Affiliated Partners), (2) between different ERNs (Full Members and Affiliated Partners), or (3) between ERN Full Members / Affiliated Partners and non-ERN institutions.

    Either home or host (secondment) institution must be a Full Member or Affiliated Partner of an ERN at the time when the application is submitted, as well as during the proposed period of the training stay.

    Successful applicants should acquire new competences and knowledge related to their research on rare diseases, with a defined research plan and demonstrable benefit to the ERN of the home and/or host institution.

    The research mobility fellowships are meant to cover stays of 4 weeks to 6 months duration.

    More information here.

  • Thu
    10
    Nov
    2022
    Fri
    11
    Nov
    2022
    Istituto Superiore di Sanità, Via Giano della Bella, 34 – Rome, Italy

    As part of the training activities proposed by EJP RD, an international course entitled “Training for patient representatives and advocates on leadership and communication skills” is a 2-day training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, open to patient representatives involved in the 24 European Reference Networks (ERNs), including members of the European Patients Advisory Groups (ePAGS), and other RD patient advocates.

    The in-person training will take place from November 10th – 11th at ISS in Rome, Italy.

    The training course may be adapted to an online format in case of uncertainty due to the evolution of the Covid-19 pandemic, or of other adverse conditions that might occur. In case of face-to-face delivery, the organisers have foreseen

    • hotel accommodation for all selected participants
    • 4 travel and accommodation fellowships for participants living and working in an EU-13 Country or in Turkey.

    Registration is currently open but will close on April 13th. The training is limited to 30 attendees, those chosen to participate from among the applicants will be informed by May 3rd, with a reserve list open until May 20th (if the training is delivered face-to-face) or September 9th (in case of online delivery).

    More information and registration herehttps://www.ejprarediseases.org/event/training-for-patient-representatives-and-advocates-on-leadership-and-communication-skills/

  • Tue
    08
    Nov
    2022
    10.00AM-11.30AMOnline

    The VASCERN ePAG Monthly Meeting will take place on November 8th, 2022 at 10.00 am (Paris time).

  • Sat
    05
    Nov
    2022
    Charenton-le-Pont, France

    In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Rhabdoid tumors in clinic and research: From basic biology to the patient bed” aimed at discussing the current clinical standard of treatment in rhabdoid tumors, as well as the controversies in the rhabdoid tumors regimen is being organized by Dr. Pascal Johann of the Universitätsklinikum Augsburg.

    The in-person event will take place on November 5th, 2022 in the Hotel Novotel at 3-5, Place des Marseillais in Charenton-le-Pont.

    Registration is open here, and closes on July 31st. Those selected to participate from among the applicants will be informed by August 15th of their selection.

    The workshop is open by prior registration and selection to both PhD or Master students from the life sciences and MD students or residents, although advanced-stage PIs or physicians with more extensive clinical experience are invited to join. All participants must be affiliated to an ERN Full Member or affiliated Partner institution.

    The training workshop is free of charge and the training methodology will be based on working in small groups, each one dedicated to a specific question in rhabdoid tumor research and “inverted classroom learning”, wherein the organisors will provide publications prior to the workshop and expect participants to have gained an overview on the topics which will be discussed beforehand. In the second part of the workshop, summaries from each working group will be presented (peer-peer learning), in order for all participants to discern take home messages for each of the major topics.

    More information herehttps://www.ejprarediseases.org/event/rhabdoid-tumors-in-clinic-and-research-from-basic-biology-to-the-patient-bed/

  • Thu
    03
    Nov
    2022
    5.00PM-6.00PMOnline

    The VASCERN MSA-WG Monthly Meeting will take place on November 3rd, 2022 at 5.00 pm (Paris time).

  • Fri
    28
    Oct
    2022
    Sat
    29
    Oct
    2022
    Netherlands

    SAVE THE DATE! The CMTC-OVM (Cutis Marmorata Telangiectatica Congenita and Other Vascular Malformations) association invites you to their Global members’ conference & 25th anniversary that will take place on 28 – 29 October 2022 in the Netherlands.

    More information and registration here.

  • Fri
    28
    Oct
    2022
    8.00AM-9.00AMOnline

    The VASCERN HHT-WG Monthly Meeting will take place on October 28th, 2022 at 8.00 am (Paris time).

  • Mon
    24
    Oct
    2022
    5.00PM-6.30PMOnline

    The VASCERN HTAD-WG Monthly Meeting will take place on October 24th, 2022 at 5.00 pm (Paris time).

  • Thu
    20
    Oct
    2022
    5:30PM-6.30PMOnline

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on October 20th, 2022 at 5.30 pm (Paris time).

  • Wed
    19
    Oct
    2022
    Fri
    21
    Oct
    2022
    Online

    As part of the training activities proposed by the EJP RD, a 3-day training course titled “Quality assurance, variant interpretation and data management in the NGS diagnostics era” is being organised by Universitätsklinikum Tübingen, in close collaboration with EJP-RD task partners, aimed the international research community: clinicians, medical specialist, laboratory scientists (EBMG-registered), junior laboratory scientists, clinical geneticists, policy makers and assessors for laboratory accreditation, and patient representatives with a basic knowledge in biology or medicine.

    The fully online event will take place from October 19th – 21th.

    Registration is currently open until August, 15th 2022. As the training course is limited to 30 attendees, respondents who are not selected will be kept on a waiting list until 7 October 2022.

    More information and registration here: https://www.ejprarediseases.org/event/quality-assurance-variant-interpretation-and-data-management-in-the-ngs-diagnostics-era-3/

  • Wed
    19
    Oct
    2022
    4.00PM-5.00PMOnline

    The VASCERN VASCA-WG Monthly Meeting will take place on October 19th, 2022 at 4.00 pm (Paris time).

  • Mon
    17
    Oct
    2022
    5:30PM-6.30PMOnline

    The VASCERN PPL-WG Monthly Meeting will take place on October 17th, 2022 at 5.30 pm (Paris time).

  • Sat
    15
    Oct
    2022

    The ERN Research Training Workshops funding opportunity is now open for applications until October 15th. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full  Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research topics, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be aiming to provide a cross-ERN added value.

    The workshops will be delivered as two-day events. The costs for the workshop organization will be covered up to a limit of €25,000 (venue, administrative, audio-visual and IT facilities essential for the workshop, catering, travel and accommodation expenses of workshops participants and invited speakers, if envisaged).

    The workshops selected for funding will be attended only by individuals affiliated to ERN institutions. Participants will be selected by the coordinator of the ERN managing institution and the workshop organizer based on pre-defined criteria.

    Application, organiser’s profile, and more: https://www.ejprarediseases.org/ern-research-training-workshop/

  • Tue
    11
    Oct
    2022
    Brussels, Belgium

    It is a great pleasure to invite you to the third edition of the Innovation Bootcamp in Rare Diseases (IBRD2022) congress in Brussels, which will be held on October 11th, 2022.

    The target audience of this event includes all professionals involved in the prevention, treatment and diagnosis of rare diseases and orphan drug research and development, including researchers, clinicians, pharma, policy makers and patient representatives.

    The program includes the following sessions:

    • Tackling delay in diagnostics
    • Newborn screening & improvement of prevention
    • The impact of patient organisations
    • Pricing of Orphan drugs and true cost of illness
    • Regulatory & access challenges in orphan drugs

    For more information and registration: https://congresscare.eventsair.com/innovation-bootcamp-in-rare-diseases-ibrd22/

  • Thu
    06
    Oct
    2022
    Fri
    07
    Oct
    2022
    Paris, France

    We are pleased to announce that VASCERN DAYS 2022 will take place from 6 to 7th of October 2022 in Paris, France.

    The VASCERN DAYS is an annual seminar of the network. This year, we will host 150 participants over this 2-day event including healthcare professionals from our Healthcare Provider (HCP) Full Members and Affiliated Partners, patient advocates from the VASCERN ePAG and various stakeholders representing DG SANTE (European Commission), FAVA-Multi (The French Network for Rare Vascular Diseases)EURORDIS, members of our VASCERN Registries Project teamEJP-RD, Fondation AP-HP, AP-HP Bichat Hospital , Orphanet and more!

    This event is only for VASCERN Full Members, Affiliated Partners and Patient Advocates.

    Don't miss live tweets throughout the event on Twitter: #VASCERNDays2022

    Access the full, detailed program here
  • Thu
    29
    Sep
    2022
    Sun
    02
    Oct
    2022
    Cascais, Portugal

    CureHHT would like to invite you to join us in Estoril, Cascais, Portugal for the 14th HHT International Scientific Conference. We will host a Welcome Reception on September 28th and scientific sessions on September 29-October 2nd, 2022.  The program this year will feature several outstanding keynote speakers (including Dr. Hans-Jurgen Mager), multiple cross-disciplinary sessions, extensive opportunities for presenting and viewing posters and for interdisciplinary discussions.

    This normally biennial meeting is well over-due. It is the must-attend event for both established and early-stage researchers, as well as clinicians experienced in treating HHT, and those just entering the field of HHT. Basic research is the engine that drives discovery of new drugs and therapies, but it relies on constant input and feedback from clinicians. Results of clinical research provide new insights in the best ways to diagnose and treat HHT.

    The meeting location is situated in the heart of the Portuguese Riviera, overlooking the bays of Estoril and Cascais, close to stunning beaches, historic fishing villages and forts. It is only a 10-minute train journey to the heart of Lisbon, one of the most charismatic and vibrant cities of Europe, and a 15-minute drive to the cooling hills of Serra de Sintra that offers picturesque landscapes and whimsical palaces and gardens. The 5-star Hotel Cascais Miragem Health & Spa offers guests an unmatched combination of culture and beauty. This is a great place for kids and families so bring everyone. The beauty and tranquility of your surroundings will only enhance the 3 and ½ days of collegial and stimulating HHT talks and poster sessions that we have planned for you!

    More information and registration: http://science.hhtconference.org/

  • Wed
    28
    Sep
    2022
    5.00PM-6.00PMOnline

    VASCERN will hold a webinar on Wednesday September 28th, 2022 from 5-6 PM (CEST) titled: Pregnancy and PGD in Vascular Ehlers-Danlos Syndrome.

    It will be presented by Dr. Michael FRANK, Consultant Cardiologist from AP-HP Hôpital Européen Georges Pompidou, Paris, France (full member) of the Medium Sized Arteries Diseases Working Group (MSA-WG).

    This webinar will consist of a scientific presentation followed by a question and answer session. It is directed towards patients with Vascular Ehlers-Danlos Syndrome (vEDS), but open to all interested.

    Register here
  • Mon
    26
    Sep
    2022
    Thu
    29
    Sep
    2022
    Istituto Superiore di Sanità (ISS) , Roma, Italia

    As part of the training activities proposed by EJP RD, the International Summer School on Rare Disease Registries and FAIRification of Data is a 5-day training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, aimed at the international research community, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients’ representatives.

    The in-person training will take place from September 26th – 30th at ISS in Rome, Italy. The training course may be adapted to an online format in case of uncertainty due to the evolution of the Covid-19 pandemic, or of other adverse conditions that might occur.

    The training course consists of two modules, and registration is possible for either module separately or for the course as a whole:

    • “Rare Disease Registries”, September 26th – 28th
    • “FAIRification of Data”, September 29th – 30th

    Registration is currently open but will close on April 13th. As each training module is limited to 30 attendees, those chosen to participate from among the applicants will be informed by May 3rd, with a reserve list open until May 20th (if the training is delivered face-to-face) or September 9th (in case of online delivery).

    More information and registration here: https://www.ejprarediseases.org/event/international-summer-school-on-rare-disease-registries-and-fairification-of-data/

  • Mon
    26
    Sep
    2022
    5.00PM-6.30PMOnline

    The VASCERN HTAD-WG Monthly Meeting will take place on September 26th, 2022 at 5.00 pm (Paris time).

  • Wed
    21
    Sep
    2022
    4.00PM-5.00PMOnline

    The VASCERN VASCA-WG Monthly Meeting will take place on August 17th, 2022 at 4.00 pm (Paris time).

  • Mon
    19
    Sep
    2022
    5:30PM-6.30PMOnline

    The VASCERN PPL-WG Monthly Meeting will take place on September 19th, 2022 at 5.30 pm (Paris time).

  • Thu
    15
    Sep
    2022
    5.30PM-6.30PMOnline

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on September 15th, 2022 at 5.30 pm (Paris time).

  • Wed
    14
    Sep
    2022
    Sun
    18
    Sep
    2022
    Rome, Italy

    The Ehlers-Danlos Society is delighted to announce the dates for the International Scientific Symposium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders. This will be a hybrid event with options to join in person or virtually.

    The International Consortium on Ehlers-Danlos Syndromes and Related disorders is bringing together leading experts, clinicians, and scientists in the field of the Ehlers-Danlos syndromes and hypermobility spectrum disorders for a high quality, scientific program with a focus on Translational Medicine in EDS and HSD – from Basic Science to Community.

    September 14-17 is suitable for Healthcare Professionals. September 18 is suitable for members of the EDS and HSD community, their families, and caregivers. 

    This event has been approved for up to 20.5 CME/CEU/CE Credits, which will be available for healthcare professionals to claim for sessions that are viewed LIVE.

    Early Bird Registration pricing is available until July 1, 2022. After July 1, 2022, full registration costs will apply.

    More information and registration here

  • Wed
    07
    Sep
    2022
    Sat
    10
    Sep
    2022
    Milan, Italy

    Save the date for the European Academy of Dermatology and Venereology (EADV) conference themed Designing the Future of Dermatology and Venereology, which will take place in Milan, Italy and online from August 7th to 10th, 2022. This four-day event will include over 170 sessions, 600 speakers and a Patient Advocacy Booth.

    For more information and registration: https://eadvcongress2022.org/registration/

     

  • Thu
    01
    Sep
    2022

    The European Joint Programme on Rare Diseases (EJP RD) Networking Support Scheme (NSS) is now open!

    The scheme will provide financial support to applicants for fostering organization of workshops or conferences for new research networks or existing/expanding research networks to strengthen collaborations and to enable exchange of knowledge.

    Eligible applicants to apply for the NSS are health care professionalsresearchers and patient advocacy organizations from the following countries involved in the EJP RD (in alphabetical order):

    Armenia*, Austria, Belgium, Bulgaria*, Croatia*, Czech Republic*, Denmark, Estonia*, Finland, France, Germany, Georgia*, Greece, Hungary*, Ireland, Israel, Italy, Latvia*, Lithuania*, Luxembourg, Malta*, Norway, Poland*, Portugal, Romania*, Serbia*, Slovakia*, Slovenia*, Spain, Sweden, Switzerland, The Netherlands, Turkey*, United Kingdom.

    The countries that are indicated with an asterisk (*) are usually seen as underrepresented countries.

    At least one Principal applicant and two co-applicants from three different countries mentioned above have to apply together for support of a Networking event.

    Maximum budget for networking event: € 30,000

    The NSS is open on a continuous basis.

    The applications will be collected on the following preliminary dates in 2022.

    • September 1, 2022 at 14.00 (CEST)
    • December 1, 2022 at 14.00 (CET)

    All information, including the call documents, can be found on the EJP-RD website here.

  • Mon
    29
    Aug
    2022
    Thu
    01
    Sep
    2022
    Paris, France

    Save the date for the Marfan Foundation's Science in Paris event which will take place in Paris, France from August 29th-September 1st, 2022. This four-day meeting will feature three separate, but connected, meetings which aim to enhance collaboration and discovery to ultimately benefit patients and families. These meetings are:

    • August 29, 2022 - DEFY Foundation 5th Scientific Meeting on Vascular Ehlers-Danlos Syndrome
      Registration for this meeting is free, thanks to generous support from the DEFY Foundation
    • August 30-31, 2022 - 11th International Symposium on Marfan, Loeys-Dietz, and Related Conditions
      (Aortic Summit Poster Session)
    • September 1, 2022 7th  - GenTAC Aortic Summit

    Registration opens on April 1st, 2022.

    For more information read the event's brochure here

  • Sun
    28
    Aug
    2022
    Paris, France

    Registration is now open for the second international patient symposium on genetic aortic and vascular conditions, which is set for Sunday, August 28, 2022, at Le Méridien Etoile in Paris, France. Registration is free but required.

    Confirmed speakers include Dr. Juan Bowen, Mayo Clinic, Dr. Alan Braverman, Washington University in St. Louis, Dr. Scott LeMaire, and Baylor-St. Luke’s, Dr. Hal Dietz, Johns Hopkins, Dr. Kim Eagle, University of Michigan, Dr. Bart Loeys (VASCERN HTAD and MSA WG member), University of Antwerp (Belgium), and Dr. Shaine Morris, Texas Children’s Hospital.

    Medical presentations will cover diagnosis, medical and surgical treatments, and genetics related to Marfan, Loeys-Dietz, vEDS, and other genetic aortic and vascular conditions. Attendees will have an opportunity to network with the presenters and with each other.

    Please register here

  • Fri
    26
    Aug
    2022
    8.00AM-9.00AMOnline

    The VASCERN HHT-WG Monthly Meeting will take place on August 26th, 2022 at 8.00 am (Paris time).

  • Mon
    22
    Aug
    2022
    5.00PM-6.30PMOnline

    The VASCERN HTAD-WG Monthly Meeting will take place on August 22nd, 2022 at 5.00 pm (Paris time).

  • Wed
    17
    Aug
    2022
    4.00PM-5.00PMOnline

    The VASCERN VASCA-WG Monthly Meeting will take place on August 17th, 2022 at 4.00 pm (Paris time).

  • Sun
    14
    Aug
    2022

    IRDiRC has four Scientific Committees, one each for Diagnostics, Therapies, Interdisciplinary, and Regulatory aspects of rare diseases research. The Diagnostic Scientific Committee (DSC) identifies current and future bottlenecks to rare disease gene discovery, addresses challenges and roadblocks in rare disease diagnosis, and collaborates with international partners to develop tools and resources to facilitate genomic data discovery, analyses and sharing.

    IRDiRC is currently looking for clinicians and experts in genetics, genomics, bioinformatics, molecular diagnostics, and biochemistry who can commit to quarterly teleconferences, a yearly face-to-face meeting, and regular committee activities, including email correspondence.

    Interested candidates are invited to send their resume, biosketch and letter of motivation to scisec-irdirc@ejprarediseases.org before the 14th of August 2022.

    More information about the The Diagnostic Scientific Committee (DSC) : https://irdirc.org/dsc/

  • Mon
    18
    Jul
    2022
    5.30PM-6.30PMOnline

    The VASCERN PPL-WG Monthly Meeting will take place on July 18th, 2022 at 5.30 pm (Paris time).

  • Tue
    12
    Jul
    2022
    Fri
    15
    Jul
    2022
    Lyon, France

    Are you an adolescent aged from 12 to 18 interested in the themes of health, biomedical research, healthcare, and children rights?

    Are you a patient with a chronic rare disease interested in getting the skills to contribute in developing and shaping research making it more suitable for children?

    If yes, the free Paediatric expert patients training workshop organised by EJP-RD is for you! The event will take place in Lyon, France on July 12-15 at the iCAN Summit.

    The event is free and accommodation and travel costs are fully covered.

    Show your interest before July 1st!

    More information: https://www.ejprarediseases.org/expression-of-interest-to-participate-in-the-second-paediatric-expert-patients-training-workshop/

  • Fri
    08
    Jul
    2022
    10.00AM-5.00PMOnline

    EU4Health Programme has been adopted in March 2021 with EUR 5.3 billion during 2021-27, an unprecedented level of financial commitment for a Union investment in health.

    Each year a targeted consultation is launched to seek opinion of stakeholders about current and future EU health priorities and strategic orientations and on key health needs to be addressed through EU4Health annual Work Programmes, providing inputs for reflection on the Work Programme under preparation and beyond.

    This webinar is the opportunity for participants to provide their input on the most burning health issues in the EU and how to address them.

    For more information, click here.

    You can register for this webinar here

  • Thu
    07
    Jul
    2022
    5.00PM-6.00PMOnline

    The VASCERN MSA-WG Monthly Meeting will take place on July 11th, 2022 at 5.00 pm (Paris time).

  • Tue
    05
    Jul
    2022
    5:30PM-6.30PMOnline

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on July 5th, 2022 at 5.30 pm (Paris time).

  • Mon
    04
    Jul
    2022
    Tue
    05
    Jul
    2022
    Bari, Italy

    In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases” aimed at facilitating discussion and exchange of knowledge on the M&S methodologies and strategies as innovative and promising enough for facing complex multifactorial or rare diseases and conditions that require highly specialised treatments and resources is being organised by Donato Bonifazi of the Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF).

    The in-person event will take place over two days on July 4th – 5th at the Hotel Excelsior in Bari, Italy.

    The workshop is open by prior registration and selection to PhD students, post-doc researchers, senior scientists, young clinicians, investigators and academics and who are employees of or affiliated to an ERN Full Member or affiliated Partner institution.

    The training workshop is free of charge and the training methodology will be based on lectures, seminars, and practical sessions, aimed at providing concrete research skills.

    Registration has been extended to June 17th, 2022.

    More information and registration herehttps://www.ejprarediseases.org/event/modelling-simulation-research-methodologies-for-small-populations-in-rare-diseases/

     

  • Fri
    01
    Jul
    2022
    8.00AM-9.00AMOnline

    The VASCERN HHT-WG Monthly Meeting will take place on July 1st, 2022 at 8.00 am (Paris time).

  • Thu
    30
    Jun
    2022
    10.00AM-12.30PMOnline

    We are happy to invite you to take part in a workshop addressing “Ethics and regulatory considerations for ERN Data Access Committee members”.

    This workshop is jointly organised by ERICA and EJP RD and will take place online on 30th June from 10 am to 12:30 pm.

    It primarily aims to train the members of the ERNs Data Access Committee members on the legal and ethical aspects to consider when examining an incoming data access request. All other interested stakeholders are welcome to join.

    For more information and registration: https://www.ejprarediseases.org/ejp-rd-erica-workshop-ethics-and-regulatory-considerations-for-ern-data-access-committee-members/

  • Mon
    27
    Jun
    2022
    Fri
    01
    Jul
    2022
    Online Meeting

     

    The ECRD is recognised globally as the largest, patient-led rare disease policy event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place.

    Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1500 stakeholders in the rare disease community – patient advocates, policy makers, researchers, clinicians, healthcare professionals, healthcare industry representatives, academics, payers, regulators and Member State representatives.

    The next ECRD will take place fully online from 27 June to 1 July 2022.

    This 11th edition follows a pivotal two-year Rare 2030 Foresight Study, supported by the European Parliament and European Commission, that guided a large-scale and multi-stakeholder reflection on rare disease policy in Europe through 2030.

    The concluding recommendation of Rare2030 was the need for a new European policy framework on rare diseases with measurable and actionable goals. Current actions at Member State level alone, or legislative changes in specific areas are not enough. We need a new European collective strategy for rare diseases to bring Member States’ commitment to rare diseases under a common umbrella and mark a step forward in the post-COVID world.

    This ECRD will be a critical opportunity for all stakeholders to consider how to transform this exhaustive review of the strategy on rare diseases into a proposal of concrete actions ultimately creating the ecosystem required to address the unmet needs and persisting inequalities across Europe.

    Poster abstracts submissions for the ECRD 2022 are now open until 31st March 2022.

    Submit your abstract here: https://www.rare-diseases.eu/posters/

    More information on: https://www.rare-diseases.eu

  • Mon
    27
    Jun
    2022

    The European Commission is pleased to inform you that the 2023 Stakeholders’ targeted consultation on EU4Health priorities, strategic orientation, and needs is now open and will run until 27 June 2022.

    This targeted consultation is intended to seek the opinion of stakeholders including the wide European health community such as hospitals, organizations representing patients, civil society, and other parties active in public health and social issues; healthcare professionals and healthcare providers; researchers, academia, and experts networks; businesses and their associations; and Member States authorities, about current and future EU health priorities and strategic orientations and on key health needs to be addressed through EU4Health annual Work Programmes, providing inputs for reflection on the 2023 EU4Health Work Programme and beyond.

    You can find more information on the consultation here.

    Fill the survey here

  • Mon
    27
    Jun
    2022
    5.00PM-6.30PMOnline

    The VASCERN HTAD-WG Monthly Meeting will take place on June 27th, 2022 at 5.00 pm (Paris time).

  • Mon
    20
    Jun
    2022
    Thu
    23
    Jun
    2022
    Liège, Belgium

    The 70th International Congress of the European Society for CardioVascular and Endovascular Surgery (ESCVS) and for the 7th International Meeting on Aortic Diseases (IMAD) will take place in Leige, Belgium from June 20-23rd, 2022.

    Call for Abstracts are open until the March 15th, 2022

    Submit your abstract to the 70th ESCVS congress here

    Submit your abstract to the 7th IMAD here

    More info here

     

  • Tue
    14
    Jun
    2022
    Wed
    15
    Jun
    2022
    Hospices Civils de Lyon in Lyon, France.

     

    In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Functional exploration of genetic variants in cardiac diseases” aimed at presentation of functional explorations of variants of interest identified using DrosophilaC. elegans, Zebrafish and iPSc models to understand the molecular bases of genetic diseases, in particular heart and muscle diseases, is being organised by Philippe Chevalier of the Hospices Civils de Lyon.

    The in-person event will take place over two days on June 14th – 15th at the Hospices Civils de Lyon in Lyon, France.

    The workshop is open by prior registration and selection to cardiologists, molecular biologists, post-docs, medical fellows, and PhD students and who are employees of or affiliated to an ERN Full Member or affiliated Partner institution.

    The training workshop is free of charge and consists of interactive presentations and discussions.

    Registration closes on May 1st, and those selected to participate from among the applicants will be informed by May 9th of their selection.

    More information and registration herehttps://www.ejprarediseases.org/event/ejp-rd-ern-workshop-functional-exploration-of-genetic-variants-in-cardiac-diseases/

  • Tue
    14
    Jun
    2022
    Wed
    15
    Jun
    2022
    Online

    University Medical Centre Groningen (UMCG) and Fondazione Telethon (FTELE) along with other EJP RD partners are organizing an EJP RD Training Workshop titled “Genetic Biobanks for Rare Disease Research” targeted at biomedical researchers, medical professionals, and biobank managers who want to learn about genetic biobanks in rare disease research.

    The training workshop will take place over two days on June 14th – 15th from 09.00 – 17.00 CET.

    The training workshop is organized as a series of lectures presented by experts in the specific topics. The first day of the training will focus on Data Management and Tools. The second day will cover the ELSI aspects biobankingEuropean privacy regulations (GDPR)ELSI considerations in genetics, and the stainability of biobanks including a discussion on public-private collaborations.

    Registration for the workshop is free but mandatory and open to the international research community, clinicians, medical specialists, RD biobank managers, healthcare professionals and RD patient representatives.

    Registration closes on May 29th, and those selected to participate from among the applicants will be informed of their selection on June 2nd.

    More information and registration here: https://www.ejprarediseases.org/event/genetic-biobanks-for-rare-disease-research-2/

  • Mon
    13
    Jun
    2022

    EJP RD is glad to announce today (May 2nd) the opening of the call for Research Mobility Fellowships, which aims to support PhD students, postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.

    Deadline: 13 June

    The exchange can be carried out (1) within the same ERN (Full Members and Affiliated Partners), (2) between different ERNs (Full Members and Affiliated Partners), or (3) between ERN Full Members / Affiliated Partners and non-ERN institutions.

    Either home or host (secondment) institution must be a Full Member or Affiliated Partner of an ERN at the time when the application is submitted, as well as during the proposed period of the training stay.

    Successful applicants should acquire new competences and knowledge related to their research on rare diseases, with a defined research plan and demonstrable benefit to the ERN of the home and/or host institution.

    The research mobility fellowships are meant to cover stays of 4 weeks to 6 months duration.

    More information here.

  • Fri
    10
    Jun
    2022
    Paris, France

    The VASCERN NEUROVASC-WG will have a face-to-face meeting in Paris, France

  • Thu
    09
    Jun
    2022
    Fri
    10
    Jun
    2022
    Lyon, France

     

    In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Translational research on bone impairment in rare diseases” aimed at giving an update on translational research on bone impairment in rare diseases and bringing together experts and trainees to facilitate collaborations is being organised by Justine Bacchetta of the Faculty of Medicine of Lyon.

    The in-person event will take place over two days on June 9th – 10th at the Faculty of Medicine of Lyon in Lyon, France.

    The workshop is open by prior registration and selection to senior scientists, senior physicians, postdocs, medical fellows, and PhD students who are employees of or affiliated to an ERN Full Member or affiliated Partner institution. 

    The training workshop is free of charge and consists of interactive presentations and discussions on different areas of interest. On the second day, a “meet the experts” session will encourage small group talks, exchanges, and networking.

    Registration closes on March 27th, and those selected to participate from among the applicants will be informed by April 4th of their selection.

    More information and registration here: https://www.ejprarediseases.org/event/ejp-rd-ern-workshop-translational-research-on-bone-impairment-in-rare-diseases/

  • Wed
    08
    Jun
    2022
    Brussels, Belgium

    The VASCERN PPL-WG will have a face-to-face meeting in Brussels, Belgium

  • Fri
    03
    Jun
    2022

    The Orphan Disease Center is accepting applications for the CLA Young Investigator Award, a one-year grant to support PhDs, postdocs, medical doctors, and other early career researchers to conduct research in complex lymphatic anomalies such as Gorham Stout Disease (GSD), Generalized Lymphatic Anomaly (GLA), Kaposiform Lymphangiomatosis (KLA) and Central Conducting Lymphatic Anomaly (CCLA). International applicants are invited to submit proposals in any field of lymphatic research.

    Deadline: 3 June

    The awardee will conduct the proposed research project under the supervision of a scientific mentor. There are up to two awards available.

    Applicants must have a PhD, MD, or MD/PhD or equivalent degree, and must not hold a position higher than Instructor

    More information here

  • Fri
    20
    May
    2022
    Lyon, France

    HHT working group members will meet at hopital "femme mère enfant"  Lyon, France, for the annual face to face meeting.

  • Sat
    14
    May
    2022
    virtual

    Marfan Foundation

     

    It’s a magical feeling, from the United States across the sea in Europe, down under in Australia and beyond - we are all connected. This is our 3rd Global Walk for Victory, and we are stronger and more united then ever!

    We hope you will join our virtual international program which brings the Marfan, Loeys-Dietz (LDS), Vascular Ehlers-Danlos (VEDS), and related conditions community together across the globe. The support of Walk participants and donors helps to ensure a better life for everyone with genetic aortic and vascular conditions.

    This high-energy virtual party will include interactive games, guest speakers, opportunities to connect with community members, and more! So, get your team registered, invite your friends and family to support the mission of The Marfan Foundation by donating to your page, and get ready to celebrate with us on May 14!

    Thank you to our Walk Leadership!
    Medical Chairs:
    North America Chair – Dr. Mary Sheppard, UK Healthcare (Kentucky)
    European Chair – Dr. Guillaume Jondeau Hopital Bichat (Paris)
    Community Chair:
    Betcy Mattarita

    For more information, contact Meredith Mischner at mmischner@marfan.org.

    Register today :  https://give.marfan.org/event/2022-global-virtual-walk-for-victory/e374568

  • Thu
    12
    May
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on May 12th, 2022 at 5.30 pm (Paris time)

  • Tue
    10
    May
    2022
    Fri
    13
    May
    2022
    Vancouver, B.C.

    The International Society for the Study of Vascular Anomalies (ISSVA) will be hosting the ISSVA World Congress 2022 (formerly the Workshop) from May 10-13th 2022 in Vancouver, Canada.

    The ISSVA World Congress 2022 will provide the opportunity to learn through a multi-disciplinary approach and will be attended by a wide array of specialists such as intervention radiologists, dermatologists, plastic surgeons, ENT surgeons, pediatricians, pediatric surgeons, oncologists, pathologists... and more! As usual, many members of the Vascular Anomalies (VASCA) WG will be in attendance at this international event.

    More information here

     

  • Fri
    06
    May
    2022
    4.00PM-6.30PMONLINE MEETING

    As part of the EJP RD Training series, an advanced-level training webinar on the topic “Composite endpoints including patient relevant endpoints (Quality of Life)” aimed at introducing the generalized pairwise comparison ideas and concepts as well as demonstrating its benefit in small sample trials, more particularly in including patient relevant endpoints, such as quality of life (QoL), is being organized by Universitaetsklinikum Aachen (Germany), Istituto Ortopedico Rizzoli IRCCS (Italy) and Assistance Publique Hôpitaux de Paris (France).

    The training webinar will be held on May 6th from 16.00 – 18.30 CET.

    The training consists of two parts: a 1.5-hour training in relatively recent statistical inference with the flexible class of generalized pairwise comparison tests for multiple endpoints, followed by 1 hour of panel discussion with experts from regulatory, pharma-industrial, academic, and clinical fields. The event is open to the international research community, clinicians, medical specialists, healthcare professionals and advocacy patient groups with knowledge of rare disease Clinical Trials.

    The training is free, and registration is mandatory. Registration closes on May 2nd.

    For more information and registration: https://www.ejprarediseases.org/event/composite-endpoints-including-patient-relevant-endpoints-quality-of-life/

  • Thu
    05
    May
    2022
    WEBEX

    VASCERN's MSA working group  will have a full day of Webex meeting.

  • Wed
    04
    May
    2022
    Gliwice, Poland

    In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Endocrine cancer: A challenge in adults and children” aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute.

    The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National Research Institute in Gliwice, Poland.

    The workshop is open by prior registration and selection to endocrinologists, oncologists, surgeons, radiotherapists, internists and pediatricians, pathologists, radiologists, nuclear medicine specialists who are employees of affiliated to an ERN Full Member or affiliated Partner institution
    The training workshop is free of charge.  Travel and hotel expenses will be reimbursed for all selected (max 20) ERN participants. Lunch and dinner will be provided on site for all participants.

    Registration closes on January 28th, 2022 and those selected to participate from among the applicants will be informed by February 28th, 2022 of their selection.

    More information and registration here: https://www.ejprarediseases.org/event/endocrine-cancer-a-challenge-in-adults-and-children/

  • Thu
    28
    Apr
    2022
    Mon
    02
    May
    2022
    BORGO SAN LUIGI, MONTERIGGIONI, ITALY

     

    Montalcino Aortic Consortium

    The Montalcino Aortic Consortium seeks to improve clinical outcomes of individuals with
    heritable thoracic aortic disease through this large international collaboration of medical
    professionals. The goal of this meeting is to define gene-based treatment guidelines from
    MAC achievements so far and prioritize research questions, using the infrastructure of
    MAC, to be addressed by the consortium over the next few years.

    https://www.montalcinoaorticconsortium.org/

  • Thu
    28
    Apr
    2022
    6.00PM-7.30PMONLINE WEBINAR

    C4c is hosting an online webinar on 28th April from 6pm to 7:30 pm CET.

    This webinar is open to all patients and patient representatives who are interested in finding out more about the c4c project and how to get involved in it!

    To attend this webinar – register here!

    The main objective of this webinar is to explain how patients have been engaged within the c4c project, further opportunities for engagement, and to share experiences and feedback with the participants.

    To find out more about the work c4c is doing to involve patients click here.

    The webinar will be in English and will be recorded and published on the c4c website.

  • Mon
    25
    Apr
    2022

    VASCERN's HTAD WG will have a face-to-face meeting in Paris, France

  • Fri
    22
    Apr
    2022
    8.00AM-9.00AMWEBEX

    The VASCERN HHT-WG Monthly Meeting will take place on April 22nd, 2022 at 8.00 am (Paris time).

  • Wed
    20
    Apr
    2022
    4.00PM-5.00PMWEBEX

    The VASCERN VASCA-WG Monthly Meeting will take place on April 20th, 2022 at 4.00 pm (Paris time).

  • Mon
    18
    Apr
    2022
    Sun
    03
    Jul
    2022
    Online

    The MOOC (Massive Open Online Course) "Diagnosing Rare Diseases: from the Clinic to Research and back" co-developed by EJP RD, ERN IthacaERN GENTURIS and the French Foundation for Rare Diseases is open continuously for enrollment

    We specifically encourage medical and biomedical science students to register and follow the MOOC. 

    Facilitation will be guaranteed till July 3rd, 2022 by the mentoring team.

    Registration is free and open at this link.

    You can check the syllabus here.

     

  • Mon
    18
    Apr
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN PPL-WG Monthly Meeting will take place on April 18th 2022 at 5.30 pm (Paris time).

  • Thu
    14
    Apr
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on April 14th, 2022 at 5.30 pm (Paris time).

  • Tue
    12
    Apr
    2022
    10.00AM-11.30AMZOOM Meeting

    The VASCERN ePAG Monthly Meeting will be taking place on April 12th 2022 from 10 am to 11:30 am (Paris time).

  • Mon
    11
    Apr
    2022
    Wed
    13
    Apr
    2022
    Online Meeting

    As part of the training activities proposed by EJP RD, an online training course on “Training on strategies to foster solutions of undiagnosed rare disease cases” is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners.
    The online event will take place over three days from on April 11th – 13th.
    Through the presentation of sample use cases that have long eluded diagnosis, the course will provide participants with with useful tools, instruments and knowledge on novel strategies to foster solutions of undiagnosed rare diseases cases. Moreover, the course will facilitate networking among professionals involved in undiagnosed rare conditions.
    The course is open to the international research community, to clinicians and to medical specialists who have experience and concrete interest in the diagnosis and research on rare diseases.
    To ensure active participation and exchange with teaching staff and participants, a maximum of 30 attendees will be admitted.
    Registration is mandatory and is currently open. Registration closes on March 6th.
    More information and registration here: https://www.ejprarediseases.org/event/training-on-strategies-to-foster-solutions-of-undiagnosed-rare-disease-cases-2/

  • Thu
    07
    Apr
    2022
    5.00PM-6.00PMWEBEX

    The VASCERN MSA-WG Monthly Meeting will take place on April 7h, 2022 at 5.00 pm (Paris time).

  • Wed
    06
    Apr
    2022
    8.00AM-5.00PMBRUSSELS BELGIUM

    VASCERN's VASCA will have a face-to-face meeting in Brussels, Belgium.

  • Thu
    31
    Mar
    2022
    Fri
    01
    Apr
    2022
    Centre Hospitalier Universitaire de Rennes in Rennes, France

     

    In the context of EJP RD’s ERN Workshops, an in-person workshop titled "Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment" aimed at sharing participants' expertise on research in different areas of spinal dysraphism and opening the way to new research projects is being organised by Centre de Référence Spina Bifida – Dysraphismes C-MAVEM, Centre Hospitalier Universitaire de Rennes.

    The face-to-face event (in-person on site) will take place over two days on March 31st – April 1st, 2022 at the Centre Hospitalier Universitaire de Rennes in Rennes, France.

    The workshop is open by prior registration and selection to geneticists, fetal medicine experts, neurosurgeons, rehabilitation medicine specialists, pediatric and adult urologists, pediatricians who are employees of or affiliated to an ERN-Full Member or affiliated Partner institution. 

    The training workshop is free of charge. The workshop will consist of interactive presentations and discussions on different areas of interest.

    Registration closes on January 28th, 2022 and those selected to participate from among the applicants will be informed by February 15th, 2022 of their selection.

    More information and registration here: https://www.ejprarediseases.org/event/trans-ern-working-group-for-spina-bifida-spinal-dysraphism-workshop-for-future-research-on-innovative-diagnostics-and-interdisciplinary-treatment/

     

  • Wed
    30
    Mar
    2022
    5:30PM-6:30PMZoom

    VASCERN will hold a webinar on Wednesday March 30th, 2022 from 5:30pm to 6:30pm (CET) entitled: HHT and nosebleeds.

    Presenters include  members of the Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG):Professor Anette Kjeldsen, Dr. Freya Droege, Dr. Ruben Hermann, Professor Urban Geisthoff, Claudia Crocione (ePAG Co-Chair for HHT) and Christina Grabowski (ePAG Deputy Co-Chair for HHT).

    This webinar will consist of a scientific presentation followed by a question and answer session. It is directed towards patients with Hereditary Haemorrhagic Telangiectasia (HHT), but open to all interested.

    Register here
  • Mon
    28
    Mar
    2022
    5.00PM-6.00PM

    The VASCERN HTAD-WG Monthly Meeting will take place on March 28th, 2022 at 5.00 pm (Paris time).

  • Fri
    25
    Mar
    2022
    8.00AM-9.00AMWEBEX

    The VASCERN HHT-WG Monthly Meeting will take place on March 25th 2022 at 8.00 AM (Paris time).

  • Wed
    23
    Mar
    2022

    The ERN Research Training Workshops funding opportunity is now open for applications until April 25th. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full  Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research topics, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be aiming to provide a cross-ERN added value.  

    The workshops will be delivered as two-day events. The costs for the workshop organization will be covered up to a limit of €25,000 (venue, administrative, audio-visual and IT facilities essential for the workshop, catering, travel and accommodation expenses of workshops participants and invited speakers, if envisaged). 

    The workshops selected for funding will be attended only by individuals affiliated to ERN institutions. Participants will be selected by the coordinator of the ERN managing institution and the workshop organizer based on pre-defined criteria. 

    Application, organiser’s profile, and more: https://www.ejprarediseases.org/ern-research-training-workshop/ 

     

  • Mon
    21
    Mar
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN PPL-WG Monthly Meeting will take place on March 21st, 2021 at 5:30 pm (Paris time).

  • Wed
    16
    Mar
    2022
    4.00-5.00PMWEBEX

    The VASCERN VASCA-WG Monthly Meeting will take place on March 16 th , 2022 at 4:00 pm (Paris time)

  • Mon
    14
    Mar
    2022
    5.00PM-6.00PMWEBEX

    The VASCERN MSA-WG Monthly Meeting will be taking place on March 14th, 2022 at 5 pm (Paris time).

  • Thu
    10
    Mar
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on March 10th, 2022 at 5.30 pm (Paris time)

  • Tue
    08
    Mar
    2022
    10.00AM-11.30AMZOOM Meeting

    The VASCERN ePAG Monthly Meeting will take place on  March 8th, 2022 from 10 am to 11:30 am (Paris time).

  • Fri
    04
    Mar
    2022
    Sat
    05
    Mar
    2022
    University Hospital Nice, Pasteur 2 Hospital – Galet, Nice, France (hybrid event: on site and by videoconference)

    In the context of EJP RD’s ERN Workshops, a hybrid workshop on “contemporary outcome measures in neuromuscular diseases aimed at understanding the advancement of technologies with digital outcome measures in neuromuscular diseases is being organised by Prof. Sabrina Sacconi of University Hospital Nice.The hybrid event (in-person on site and online by videoconference) will take place over two days on:

    March 4th – 5th, 2022 at the University Hospital Nice, Pasteur 2 Hospital in Galet, Nice, France.The workshop is open by prior registration and selection to different target groups, especially those who want to deepen their knowledge in clinical outcomes measures and innovative digital outcomes, consisting of researchers and clinicians affiliated to an ERN Full Member or Affiliated Partner Institution, physiotherapists and students.
    The training workshop is free of charge. The workshop will consist of both presentations by experts in the field of neuromuscular diseases as well as interactive panel discussions and quiz sessions to train participants in performing and interpreting various outcome measures.
    Registration closes on January 10th, 2022 and those selected to participate from among the applicants will be informed by January 14th, 2022 of their selection.


    More information and registration here: 
    https://www.ejprarediseases.org/event/contemporary-outcome-measures-in-neuromuscular-diseases/

  • Mon
    28
    Feb
    2022

    VASCERN will participate in the the international rare disease day on the 28th February.

    More information on :  https://www.rarediseaseday.org

  • Mon
    28
    Feb
    2022
    5.00PM-6.30PMWEBEX

    The VASCERN HTAD-WG Monthly Meeting will take place on February 28th, 2022 at 5.00 pm (Paris time).

  • Fri
    25
    Feb
    2022
    8.00AM-9.00AMWEBEX

    The VASCERN HHT-WG Monthly Meeting will take place on February 25th 2022 at 8.00 AM (Paris time).

  • Thu
    24
    Feb
    2022
    5:00PM-6:00PM (CET)Zoom Webinar

    VASCERN will hold a webinar on Thursday February 24th, 2022 from 5pm to 6pm (CET) entitled: VASCERN Webinar: Aortic surgery in Marfan syndrome (and other HTADs): What can patients do before and after surgery to improve the outcome and what to expect after surgery. 

    Presenters include Professor Klaus KALLENBACH, cardiac surgeon from Centre Hospitalier de Luxembourg, Luxembourg (Affiliated Partner member) and members of the Heritable Thoracic Aortic Diseases Working Group (HTAD WG), and Margit ASCHENBRENNER, Patient Advocate for the HTAD ePAG (Marfan Initiative Österreich).

    This webinar will consist of a scientific presentation followed by a question and answer session with questions collected from the HTAD patient community. It is therefore directed towards patients with Marfan syndrome  and other HTADs, but open to all interested.

    Register here
  • Mon
    21
    Feb
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN PPL-WG Monthly Meeting will take place on February 21st, 2021 at 5:30 pm (Paris time).

  • Wed
    16
    Feb
    2022
    The European Joint Programme on Rare Diseases announced on December 14th 2021 the official launch of the Joint Transnational Call 2022, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases.
    The aim of the funding opportunity is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with expected impact to use the results in the future for benefit of patients
     
    TopicDevelopment of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases
    16 February: Pre-proposal submission deadline
  • Wed
    16
    Feb
    2022
    4.00PM-5.00PMWEBEX

    The VASCERN VASCA-WG Monthly Meeting will take place on February 16 th , 2022 at 4:00 pm (Paris time)

  • Mon
    14
    Feb
    2022
    5.00PM-6.00PMWEBEX

    The VASCERN MSA-WG Monthly Meeting will be taking place on February 14th, 2022 at 5 pm (Paris time).

  • Thu
    10
    Feb
    2022
    Fri
    11
    Feb
    2022
    Online

     

    On 10-11 February 2022, ERN GENTURIS, the European Reference Network on Genetic Tumour Risk Syndromes, will celebrate its 5-year anniversary with a free online conference.

    The conference will feature updates on the ERN GENTURIS tumour predisposition syndromes, reports on special ERN GENTURIS projects and patient perspectives. It will also include a half-day introductory educational session specially aimed at general practitioners.

    You can register for the conference via:     genturis2022.eu.

    Programme here: ERN_GENTURIS_conference_2022_programme 

  • Thu
    10
    Feb
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN NEUROVASC-WG Monthly Meeting will take place on February 10th, 2022 at 5.30 pm (Paris time)

  • Tue
    08
    Feb
    2022
    10.00AM-11.30AMZOOM

    The VASCERN ePAG Monthly Meeting will be taking place on February 8th, 2022 from 10 am to 11:30 am (Paris time).

  • Tue
    08
    Feb
    2022
    6:00PM-7:30PM (CET)Online

    The eleventh edition of the Black Pearl Awards will take place online on Tuesday, February 8th, 2022 from 18:00 until 19:30 CET and will bring together persons living with a rare disease, patient advocates, policy makers, scientists, healthcare professionals, industry representatives, and more.

    This event celebrates the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives. VASCERN is proud to be an official Outreach Partner of this special event.

    Registration for the Online Ceremony is now open! Register for free here

    More information on the event page here

  • Tue
    01
    Feb
    2022
    6:00PM-7:00PM (CET)Zoom Webinar

    VASCERN will hold a webinar on Tuesday February 1st, 2022 from 6-7 PM (CET) entitled: Diagnostic and Management Pathway for Capillary Malformations with Dr. Eulalia BASELGA TORRES, Pediatric Dermatologist from Hospital Sant Joan De Déu, Barcelona, Spain.

    This will be the the fourth and final of four webinars exploring the Patient (Diagnostic and Management) Pathways created by the Vascular Anomalies Working Group (VASCA WG).

    This webinar, that will consist of a scientific presentation followed by a question and answer session, will be primarily directed towards physicians who would like to learn more about these pathways in order to improve their knowledge on these rare vascular anomalies – but all interested participants are welcome to attend!

    Register here
  • Fri
    28
    Jan
    2022
    8.00AM-9.00AMWEBEX

    The VASCERN HHT-WG Monthly Meeting will take place on January 28th 2022 at 8.00 AM (Paris time).

  • Mon
    24
    Jan
    2022
    5.00PM-6.30-PMWEBEX

    The VASCERN HTAD-WG Monthly Meeting will take place on January 24th, 2022 at 5 pm (Paris time).

  • Sat
    22
    Jan
    2022
    8:30AM-17:00PMOnline

    Save the date: The Marfan Foundation's Spanish Marfan, Loeys-Dietz and VEDS summit (CUMBRE DE LA FUNDACIÓN MARFAN: Información educativa sobre Marfan, Loeys-Dietz, VEDS y condiciones relacionadas para pacientes y familias) will take place online on Saturday, January 22nd, 2022 from 8:30AM-5PM.

    VASCERN is proud to be Community Partner of this event. VASCERN members from the Heritable Thoracic Aortic Disease (HTAD WG) Dr. Arturo EVANGELISTA, from Hospital Universitari Vall d'Hebron in Barcelona Spain, and Dr. Laura MUINO MOSQUERA, from Ghent University Hospital in Ghent, Belgium, will be presenters at this event, which will be entirely in Spanish.

    Learn more and REGISTER HERE

    See the save the date flyer in Spanish here

     

  • Thu
    20
    Jan
    2022
    5:00PM-6:00PM (CET)Zoom Webinar

    VASCERN will hold a webinar on Thursday January 20th, 2022 from 5pm to 6pm (CET) entitled: Diagnostic and Management Pathway for Venous Malformations with Professor Laurence BOON, plastic and reconstructive surgeon from Cliniques universitaires Saint-Luc, Brussels, Belgium.

    This will be the the third of a series of four webinars exploring the Patient (Diagnostic and Management) Pathways created by the Vascular Anomalies Working Group (VASCA WG).

    This webinar, that will consist of a scientific presentation followed by a question and answer session, will be primarily directed towards physicians who would like to learn more about these pathways in order to improve their knowledge on these rare vascular anomalies – but all interested participants are welcome to attend!

    Register here
  • Wed
    19
    Jan
    2022
    4.00PM-5.00PMWEBEX

    The VASCERN VASCA-WG Monthly Meeting will take place on January 19 th , 2022 at 4:00 pm (Paris time)

  • Mon
    17
    Jan
    2022
    5.30PM-6.30PMWEBEX

    The VASCERN PPL-WG Monthly Meeting will take place on January 17th, 2022 at 5:30 pm (Paris time).

  • Tue
    11
    Jan
    2022
    10.00AM-11.30AMZOOM WEBINAR

    The VASCERN ePAG Monthly Meeting will take place on  January 11th, 2022 from 10 am to 11:30 am (Paris time).

  • Mon
    10
    Jan
    2022
    5.00PM-6.00PMWEBEX

    The VASCERN MSA-WG Monthly Meeting will be taking place on January 10th, 2022 at 5.00 pm (Paris time).

  • Thu
    23
    Dec
    2021
    8.00AM-9.00AMWEBEX

    The VASCERN HHT-WG Monthly Meeting will take place on December 23rd  2021 at 8 am (Paris time).

  • Mon
    20
    Dec
    2021
    5.30PM-6.30PMWEBEX

    The VASCERN PPL-WG Monthly Meeting will take place on December 20th, 2021 at 5:30 pm (Paris time).

  • Wed
    15
    Dec
    2021
    5:00PM-6:00PMZoom

    VASCERN will hold a webinar on Wednesday December 15th, 2021 from 5pm to 6pm (CET) entitled: Diagnostic and Management Pathway for Lymphatic Malformations with Dr. Nader GHAFFARPOUR, Pediatric surgeon from Karolinska University Hospital in Stockholm, Sweden.

    This will be the the second of a series of four webinars exploring the Patient (Diagnostic and Management) Pathways created by the Vascular Anomalies Working Group (VASCA WG).

    This webinar, that will consist of a scientific presentation followed by a question and answer session, will be primarily directed towards physicians who would like to learn more about these pathways in order to improve their knowledge on these rare vascular anomalies – but all interested participants are welcome to attend!

    Register here
  • Tue
    14
    Dec
    2021

    The European Joint Programme on Rare Diseases just pre-announced the Joint Transnational Call 2022, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases.

    The aim of the funding opportunity is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with expected impact to use the results in the future for benefit of patients

    TopicDevelopment of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases

    The call will open on December 14th. 

    Timetable, contact, and more information here: https://www.ejprarediseases.org/joint-transnational-call-2022/ 

     

  • Tue
    14
    Dec
    2021
    10.00AM-11.30AMZOOM WEBINAR

    The VASCERN ePAG Monthly Meeting will take place on December 14th, 2021 from 10 am to 11:30 am (Paris time).

  • Tue
    14
    Dec
    2021
    5:00 pmWEBINAR

    Save the date!

    ERN RARE-LIVER is organising a Webinar on the 14th of December on the topic of vaccinations in rare disease patients entitled:

    "ERN RARE-LIVER: Update on SARS-COV-2 vaccinations for rare disease patients."

    Especially pleased to welcome panelists from two other networks, Transpland Child and RITA.

    Registration link: 
     
     
    Panelists and details: 
     
     
  • Mon
    13
    Dec
    2021
    5.00PM-6.00PMwebex

    The VASCERN MSA-WG Monthly Meeting will be taking place on December 13th, 2021 at 5 pm (Paris time).

  • Thu
    09
    Dec
    2021
    4.00PM-5.00PMZOOM Meeting
    EJP RD is co-organising a meeting, along with the European Rare Disease Research Coordination and Support Action consortium (ERICA) and the Joint Research Centre (JRC), on Domain specific Common Data Elements (DCDEs) Curation targeted towards clinicians and people with a medical background to join.
    The online meeting will take place on December 9th, 2021 from 16.00 – 17.00 CET.
    In this meeting, the organisers will begin to curate the list of Domain specific Common Data Elements (DCDEs) compiled by the EJP RD FAIRification stewards from the data dictionaries provided by the ERN registries. The aim of the DCDEs is to be able to share domain specific data between ERNs, data that is not currently covered by the Common Data Elements (CDEs).
  • Wed
    01
    Dec
    2021
    4.00PM-5.00PMWEBEX

    The VASCERN VASCA-WG Monthly Meeting will take place on December 1st, 2021 at 4:00 pm (Paris time).

  • Fri
    26
    Nov
    2021
    8:00AM-9:00AMWEBEX

    The VASCERN HHT-WG Monthly Meeting will take place on November 26, 2021 at 8 am (Paris time).

  • Tue
    23
    Nov
    2021
    5:00PM-6:00PM (CET)Zoom Webinar

    VASCERN will hold a webinar on Tuesday November 23rd, 2021 from 5pm to 6pm (CET) entitled: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas with Dr. Andrea DIOCIAIUTI,  VASCA WG member and dermatologist from Bambino Gesù Children’s Hospital, I.R.C.C.S, in Rome, Italy.

    This will be the the first of a series of four webinars exploring the Patient (Diagnostic and Management) Pathways created by the Vascular Anomalies Working Group (VASCA WG).

    This webinar, that will consist of a scientific presentation followed by a question and answer session, will be primarily directed towards physicians who would like to learn more about these pathways in order to improve their knowledge on these rare vascular anomalies – but all interested participants are welcome to attend!

    Register here
  • Mon
    22
    Nov
    2021
    5:00PM-6:30PMWEBEX

    The VASCERN HTAD-WG Monthly Meeting will take place on November 22nd, 2021 at 5 pm (Paris time).

  • Thu
    18
    Nov
    2021
    Sat
    20
    Nov
    2021
    Copenhagen, Denmark

    The 10th International Lymphoedema Framework Conference (ILF 2021) will take place in-person from 18 – 20 November 2021 in Copenhagen, Denmark. Online participation will also be possible.

    Several VASCERN members will be in attendance including Dr. Robert Damstra (Pediatric and Primary Lymphedema (PPL) WG Chair) and Prof. Miikka Vikkula (Vascular Anomalies (VASCA) WG Chair).

    A special Patient Day will also take place on November 20th 2021! Pernille Henriksen, ePAG Co-Chair for PPL WG, will be present at this event and will give a presentation entitled Infections; the experiences, the fear and the solutions from a patient point of view for the patient day.

    See the preliminary programme here.

    To register, and for all information, go to the conference website here

  • Wed
    17
    Nov
    2021
    4:00PM-5:00PMWebex

    The VASCERN VASCA-WG Monthly Meeting will take place on November 17, 2021 at 3:45 pm (Paris time).

  • Mon
    15
    Nov
    2021
    5.30PM-6.30PMWEBEX

    The VASCERN PPL-WG Monthly Meeting will take place on November 15th , 2021 at 5:30 pm (Paris time).

  • Mon
    08
    Nov
    2021
    5:00PM-6:00PMWebex

    The VASCERN MSA-WG Monthly Meeting will be taking place on November 8th, 2021 at 5 pm (Paris time).

  • Thu
    28
    Oct
    2021
    Fri
    29
    Oct
    2021
    Online

    The PIK3CA Related Conditions International Scientific Meeting is hosted and sponsored by CLOVES Syndrome Community and will take place online from October 28th to 29th, 2021.

    This meeting will focus on the diverse range of phenotypes of the spectrum that share a PIK3CA mutation.

    The goals for this meeting are:

    • To bring together the experts in the PIK3CA pathway including clinicians, clinical researchers and basic scientists to allow opportunities to present new information, share data, foster collaboration and encourage networking.
    • To stimulate new ideas.
    • To encourage new researchers to enter the field, to collaborate with others in the field and to collaborate with our patient organizations.
    • To identify the gaps and unmet needs for our heterogenous patient populations.

     

    Professor Miikka VIKKULA, Chair of our Vascular Anomalies Working Group (VASCA-WG), is one of the Scientific Meeting Chairs.

    For more information on this event (abstract submission and registration), take a look here.

  • Mon
    25
    Oct
    2021
    5:00PM-6:30PM (CET)WebEX

    The VASCERN HTAD-WG Monthly Meeting will take place on October 25th, 2021 at 5 pm (Paris time)

  • Fri
    22
    Oct
    2021
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting will take place on October 22, 2021 at 8 am (Paris time).

  • Fri
    22
    Oct
    2021
    8:30AM-4:00PM (CET)Strasbourg, France

    The ERN Coordinators Group Meeting will take place on October 22nd, 2021 from 8:30 AM to 4 PM (CET) in Strasbourg (France).

  • Wed
    20
    Oct
    2021
    Thu
    21
    Oct
    2021
    Online

    The EURORDIS Round Table of Companies (ERTC) Workshop will take place online on 20-21 October 2021 on the topic of "The impact of the EU regulatory network strategy 2020-2025 on the development of orphan medicines".

    This is your opportunity to join us to discuss and gain insights into new methods to analyse data, new sources of data and changes in the way new Clinical Trials are conducted.

    Register for this free workshop here

    Programme here

     

  • Wed
    20
    Oct
    2021
    4:00PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on October 20th, 2021 at 4:00 pm (Paris time).

  • Mon
    18
    Oct
    2021
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on October 18th, 2021 at 5:30 pm (Paris time).

  • Thu
    14
    Oct
    2021
    5:30 amZoom Webinar

    The EURORDIS BEST PRACTICE WEBINARS: Deep dive on integration of ERNs into national health systems will take place on October 14th at 2PM (CET).

    Agenda here

    Register for this free webinar here

  • Tue
    12
    Oct
    2021
    10:00AM-11:30AM (CET)Zoom Webinar

    The VASCERN ePAG Monthly Meeting will take place on October 12th, 2021 from 10 am to 11:30 am (Paris time).

  • Thu
    07
    Oct
    2021
    Sat
    09
    Oct
    2021
    Paris, France

    VASCERN Days 2021 will take place from October 7-9th, 2021 in Paris, France. After over a year of conducting online meetings we are happy that this year's VASCERN Days will take place in person and give our members and invited stakeholders a chance to catch up!

    We are expecting over 80 participants over this 3-day event including healthcare professionals from our Healthcare Provider (HCP) Full Members and Affiliated Partners, patient advocates from the VASCERN ePAG and various stakeholders representing DG SANTE (European Commission), FAVA-Multi (The French Network for Rare Vascular Diseases)Eurordis, members of our VASCERN Registries Project teamEJP-RD, Fondation AP-HP, AP-HP Bichat Hospital , Orphanet and more!

    Don't miss live tweets throughout the event on Twitter: #VASCERNDays2021

    Access the full, detailed program here
  • Wed
    06
    Oct
    2021
    Fri
    08
    Oct
    2021
    Barcelona, Spain

    Due to COVID19, the EMBO Workshop on Vascular Malformations has been postponed. The event was due to take place from April 1st to 3rd, 2020 and will now take place from October 6-8th, 2021 in Barcelona, Spain.

    Professor Miikka VIKKULA, Chair of the VASCERN Vascular Anomalies Working Group (VASCA-WG), will be one of the speakers.

    REGISTRATION DEADLINE - 17 May 2021

    ABSTRACT SUBMISSION DEADLINE - 17 May 2021

    PAYMENT DEADLINE - 1 June 2021

    For more information on this event (programme and registration), take a look here.

  • Mon
    04
    Oct
    2021

    The European Joint Programme on Rare Diseases has launched the ERN Research Training Workshops funding opportunity. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full  Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be aiming to provide a cross-ERN added value.  

    The workshops will be delivered as two-day events. The costs for the workshop organization will be covered up to a limit of €25.000 (venue, administrative, audio-visual and IT facilities essential for the workshop, catering, travel and accommodation expenses of workshops participants and invited speakers, if envisaged). 

    The workshops selected for funding will be attended only by individuals affiliated to ERN institutions. Participants will be selected by the coordinator of the ERN managing institution and the workshop organizer based on pre-defined criteria. 

     Organizer's profile: 

     The applicant submitting workshop topics must fulfil one of the following conditions: 

    • Affiliated to any EJP RD beneficiary institution
    • Affiliated to an ERN Full Member
    • Affiliated to an ERN Affiliated Partner institution at the time when the application is submitted, as well as during the period of the execution of the workshop. 

    Application and more information here.

    Deadline to apply October 4th, 2021

  • Sat
    02
    Oct
    2021
    Sun
    03
    Oct
    2021
    Online

    The LGDA/LMI International Conference on Complex Lymphatic Anomalies will take place online from October 2-3rd, 2021.

    Organised by the Lymphangiomatosis & Gorham's Disease Alliance (LGDA), with help from its partners the Lymphatic Malformation Institute (LMI) and LGDA-Europe, this conference will bring together patients and their families, clinicians, and researchers from around the world to advance patient-driven solutions for complex lymphatic anomalies as part of our development of an international collaborative research network supported through our membership in the Rare As One Network.

    Who Should Attend:

    • Patients & Families
    • Physicians, Nurses, Allied Health Care Providers
    • Established Researchers & Post-docs
    • Medical & Graduate Students
    • Rare Disease Advocates
    • Others interested in vascular anomalies

     Basic Science and Clinical Topics:

    • Genetic Causes of Complex Lymphatic Anomalies
    • Preclinical Models to Study CCLA, GLA, GSD, and KLA
    • New Technologies for CLA Research
    • Vascular Anomalies Registries
    • Treatments for CLAs
    • Imaging Features & Biomarkers

    This free, two-day event has an exciting line-up of speakers, including VASCERN members Professor Miikka Vikkula (VASCA WG Chair), Professor Leo Schultze Kool (VASCA WG Co-Chair) and Professor Jochen Roessler (VASCA WG member). There will also be several "patient voice" sessions where people living with complex lymphatic anomalies share their unique journeys to diagnosis and treatment as well as their challenges and hopes for the future of research in this field. The full agenda can be seen here.

    Link to the event website here

    Register here

     

  • Thu
    30
    Sep
    2021
    Fri
    01
    Oct
    2021
    Leiden, The Netherlands

    In the context of EJP RD’s ERN Workshops, a face-to-face workshop on clinical epidemiological research for ERNs titled “Clinical Research: The Basics & Beyond” (consisting of presentations by experts in the field of epidemiology and a feedback session on the research projects of participants) is being organised by Prof. Olaf Dekkers and Prof. Frits Rosendaal of the Leiden University Medical Center.

    The in-person event will take place over two days on 30th September and 1st October 2021 at the Hotel Golden Tulip Leiden Centre, Schipholweg 3, 2316 XB Leiden, the Netherlands.

    The workshop is open by prior registration and selection to medical specialists affiliated to an ERN Full Member or Affiliated Partner institution and who have a special interest in clinical research with databasesRegistration closes on 18th June 2021, and those selected to participate from among the applicants will be informed by 9th July 2021 of their selection.

    Deadline to apply: 18th June 2021

    More information and registration here: https://www.ejprarediseases.org/event/clinical-research-with-databases-the-basics-beyond-workshop-in-clinical-epidemiological-research-for-erns/

  • Mon
    20
    Sep
    2021
    Fri
    24
    Sep
    2021
    Athens, Greece

    The 28th World Congress of Lymphology will take place from September 20th to 24th, 2021 at the Grand Hyatt Hotel in Athens, Greece.

    For more information on this event, check out their website here.

    If you have any questions or need help, please contact: lymphology@concopco.com

  • Thu
    09
    Sep
    2021
    Fri
    10
    Sep
    2021
    Nijmegen, the Netherlands

    The EJP RD - European Joint Programme on Rare Diseases ERN Workshop - Advances in diagnostic and therapeutic methods for lymph flow abnormalities will take place from September 9-10th,  2021 at Radboud University Medical Center, in Nijmegen, the Netherlands.

    "The aim of this workshop is to learn about lymph anatomy and physiology as well as diagnostic and therapeutic options available for rare disease patients with lymph flow disorders (lymphatic malformations, central lymph edema, Noonan syndrome and several others), with a specific attention to the innovative intranodal MR lymphangiography technique. This workshop will be an opportunity for participants to network and get acquainted with each other in order to collaborate in clinical and preclinical research studies involving this technique."

    It will be hosted by Dr. Willemijn Klein (Radboud University Medical Center Nijmegen), member of the Vascular Anomalies Working Group (VASCA WG), grant recipient of the first EJP-RD Research Training Workshop Call. Other VASCERN members will also be speakers at this event, including Professor Leo Schultze Kool (VASCA WG Co-Chair) and Dr. Robert Damstra (PPL WG Chair), Dr. Friedrich Kapp (VASCA WG member) and ePAG patient advocate Aaike van Oord (LGD Alliance Europe).

    See the Programme here

    For more information on the workshop and to apply, click here

    Deadline to apply: May 31st, 2021

  • Mon
    23
    Aug
    2021
    5:00PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on August 23rd, 2021 at 5 pm (Paris time).

  • Mon
    16
    Aug
    2021
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on August 16th, 2021 at 5:30 pm (Paris time).

  • Fri
    30
    Jul
    2021
    Sat
    31
    Jul
    2021
    Online

    The Ehlers-Danlos Society's upcoming event, EDS ECHO Event Series: Vascular Ehlers-Danlos-Syndrome (vEDS) – A Comprehensive Conference on Care for Individuals with vEDS will take place July 30-31, 2021.

    With Scientific Chair Dr. Sherene Shalhub, the latest research, management, and scientific information on vEDS and comorbidities will be presented, including topics such as:

    • Family planning, anticipating, and managing pregnancy complications
    • Children with vEDS
    • Exercise with vEDS
    • Migraines
    • BP control and management of autonomic dysfunction
    • Gastrointestinal abnormalities in vEDS
    • Pulmonary abnormalities in vEDS

    Objectives for this event are as follows:

    • To understand the genetics and biology of vascular EDS (vEDS)
    • To understand the presentation and management of non-vascular, and vascular pathology in vascular EDS (vEDS)
    • To understand the considerations of family planning and pregnancy in vascular EDS (vEDS)

    9.25 CME/CEU/CU Credits are available for Healthcare Professionals to claim for sessions that are viewed LIVE. VASCERN MSA WG member, Prof Xavier Jeunemaitre, will also be a presenter at this event.

    The full agenda and registration information can be found here

  • Fri
    23
    Jul
    2021
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #48 will take place on July 23rd, 2021 at 8 am (Paris time).

  • Fri
    16
    Jul
    2021
    4:30PM-6:00PM (CET)Videoconference call - Webex

    The 14th VASCERN Council Meeting will take place on July 16th, 2021 from 4:30 PM to 6:00 PM (Paris time).

  • Thu
    15
    Jul
    2021
    3:00PM-4:00PM (CET)Videoconference call - Webex

    The VASCERN Registry Technical Teams Working Group Meeting will take place online on July 15th, 2021 from 3 PM to 4 PM (CET).

  • Tue
    13
    Jul
    2021
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on July 13th, 2021 from 10 am to 11:30 am (Paris time).

  • Mon
    12
    Jul
    2021
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on July 12th, 2021 at 5 pm (Paris time).

  • Thu
    08
    Jul
    2021
    Sun
    11
    Jul
    2021
    Online

    The Marfan Foundation's first-ever Virtual Annual Conference will take place online from July 8-11, 2021!

    Register here

    "The four-day event offers innovative ways to reconnect with old friends and make new ones through condition discussions, social events, and open virtual spaces to hang-out and share. The medical sessions on Marfan, Loeys-Dietz, VEDS, and Stickler syndrome will, as always, feature leading experts in the field and will allow for robust question and answer exchanges. There is no cost to register.

    For our international community members, the conference offers sessions on aortic disease in Italian, French, German, and Spanish, as well as virtual meet-ups in each of these languages. In addition, several sessions will be translated live into Spanish."

    For more information on this exciting event, click here

  • Thu
    08
    Jul
    2021
    9:30AM-5:00PM (CET)Online

    EJP-RD is organising an integrative research and innovation strategy meeting on the theme of alignment of national rare disease strategies with the EJP-RD. The fully online meeting will take place on July 8th, 2021 from 09:30 AM to 5 PM (CET).

    This event is open for policy makers and persons involved in national, EU, and international rare diseases strategies.

    The workshop is organised by one of the EJP-RD work packages and will focus on:

    • Presentation of EJP-RD advancement and analysis of national actions
    • Review of country-level best practices and challenges identified from a survey
    • Discussion of the way forward.

     

    Online registration for the event is open until July 1st at the link here.

     

     

     

     

     

  • Thu
    01
    Jul
    2021
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The inter ERN Monitoring Working Group will have an online meeting on July 1st, 2021 at 5 PM (CET).

  • Wed
    30
    Jun
    2021
    5:00PM-6:00PM (CET)Zoom Webinar

    VASCERN will hold a webinar on Wednesday, June 30th, 2021 from 5pm to 6pm (CET) entitled: On collagen, the Ehlers-Danlos Syndromes and vascular fragility: what's in a name? with presented Dr. Fransiska Malfait (Medium-Sized Arteries Working Group Co-chair), from Ghent University Hospital, Belgium.

    This webinar, that will consist of a scientific presentation followed by a question and answer session, will be primarily directed towards health care professionals – but all interested participants are welcome to attend!

    Please register to join here!

     

  • Tue
    29
    Jun
    2021
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN Communication Advisory Task Force Meeting will take place online on June 29th, 2021 at 5 PM (CET).

  • Mon
    28
    Jun
    2021
    5:00PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on June 28th, 2021 at 5 pm (Paris time).

  • Thu
    24
    Jun
    2021
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The inter ERN Monitoring Working Group will have an online meeting on June 24th, 2021 at 5:30 PM (CET).

  • Wed
    23
    Jun
    2021
    Worldwide

    June is Global Hereditary Hemorrhagic Telangiectasia (HHT) Awareness month and Global HHT Awareness Day takes place on June 23rd!

    This international event is the occasion to raise awareness for this rare vascular disease. We encourage you to see what the HHT patient organisations of our European Patient Advocacy Group (ePAG) have planned this month and we will publish a short review article at the end of the month to share their activities.

  • Mon
    21
    Jun
    2021
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on June 21st, 2021 at 5:30 pm (Paris time).

  • Fri
    18
    Jun
    2021
    8:30AM-12:30PM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Virtual Spring Meeting will take place on Friday, June 18th, 2021 from 8:30AM to 12:30PM (CET).

  • Thu
    17
    Jun
    2021
    3:00PM-4:00PM (CET)Videoconference call - Webex

    The VASCERN Registry Technical Teams Working Group Meeting will take place online on June 17th, 2021 from 3 PM to 4 PM (CET).

  • Wed
    16
    Jun
    2021
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on June 16th, 2021 at 3:45 pm (Paris time).

  • Thu
    03
    Jun
    2021
    2:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Virtual Spring Meeting will take place on Monday, June 3rd, 2021 from 2pm to 6pm (CET).

  • Mon
    31
    May
    2021
    6:00PM-7:00PM (CET)Zoom Webinar

    VASCERN will hold a webinar on Monday, May 31st from 6pm to 7pm (CET) on the topic of HHT and the lungs with members of the Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG): Dr. Hans-Jurgen Mager, Prof. Marco Post, Claudia Crocione (ePAG Co-Chair for HHT) and Christina Grabowski (ePAG Deputy Co-Chair for HHT).

    This webinar will include an informative presentation followed by an interactive Q&A session.

    Register now here
  • Fri
    28
    May
    2021
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #46 will take place on May 28th, 2021 at 8 am (Paris time).

  • Thu
    27
    May
    2021
    2:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Virtual Spring Meeting will take place on Thursday, May 27th, 2021 from 2pm to 6pm (CET).

  • Tue
    25
    May
    2021
    2:00PM-7:00PM (CET)Videoconference call - Webex

    Day 2 of the VASCERN VASCA-WG Spring Meeting will take place on Tuesday, May 25th, 2021 from 2pm to 7pm (CET).

  • Thu
    20
    May
    2021
    3:00PM-4:00PM (CET)Videoconference call - Webex

    The VASCERN Registry Technical Teams Working Group Meeting will take place online on May 20th, 2021 from 3 PM to 4 PM (CET).

  • Wed
    19
    May
    2021
    12:00PM-5:00PM (CET)Videoconference call - Webex

    Day 1 of the VASCERN VASCA-WG Spring Meeting will take place on Wednesday, May 19th, 2021 from 12pm to 5pm (CET). It will continue on Tuesday, May 25th, 2021 from 2pm to 7pm (day 2).

  • Thu
    13
    May
    2021
    Sat
    15
    May
    2021
    Online

    The International Society for the Study of Vascular Anomalies (ISSVA) will host virtually a “Debates & Updates” meeting from May 13th to 15th, 2021.

    This 3-day online meeting will include talks about genetics, basic research, novel therapies and debates in the evaluation and management of patients with vascular anomalies.

    Members of our Vascular Anomalies (VASCA) Working Group will attend this online event and Professor Leo SCHULTZE KOOL, Co-Chair of the VASCA-WG, is the ISSVA Meetings Committee Chair.

    Click here to register.

    More information about this event here.

  • Wed
    12
    May
    2021
    3:00PM-7:00PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Virtual Spring Meeting will take place on Wednesday, May 12th, 2021 from 3pm to 7pm (CET).

  • Tue
    11
    May
    2021
    10:00AM-11:30AM (CET)Videoconference call - Webex

    The VASCERN ePAG Monthly Meeting will be taking place on May 11th, 2021 from 10 am to 11:30 am (Paris time).

  • Mon
    10
    May
    2021
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on May 10th, 2021 at 5 pm (Paris time).

  • Fri
    30
    Apr
    2021
    10:00AM-5:00PM (CET)Videoconference call - Webex

    The ERN Coordinators Group Meeting will take place online on April 30th, 2021 from 10 AM to 5 PM (CET).

  • Thu
    29
    Apr
    2021
    5:00PM-6:30PM (CET)Videoconference call - Webex

    The Internal ERN Coordinators Group Meeting will take place online on April 29th, 2021 at 5:00PM (CET).

  • Wed
    28
    Apr
    2021
    5:00PM-6:00PM (CET)Zoom Webinar

    VASCERN will hold a webinar on Wednesday, April 28th, 2021 from 5pm to 6pm (CET) on the topic of Classification of Vascular Anomalies with Professor Emir HAXHIJA and Dr. Paolo GASPARELLA from University Hospital Graz, Austria (VASCERN Affiliated Partner) and members of the Vascular Anomalies Working Group (VASCA-WG).

    This webinar, that will consist of a scientific presentation followed by a question and answer session, will be primarily directed towards health care professionals - but all interested participants are welcome to attend!

    Please register to join here!

  • Tue
    27
    Apr
    2021
    6:00PM-7:00PM (CET)Zoom Webinar

    The next ERN-EYE webinar, Marfan syndrome: An Update, will be a joint webinar with VASCERN. It will take place on April 27th, 2021 at 6PM (CET). 

    The first half hour will cover Marfan Syndrome and the Eye with speakers Professor Bart P LEROY and Dr. Elke O KREPS and the second half hour will cover the General & Cardiovascular Aspects of Marfan Syndrome with VASCERN's Heritable Thoracic Aortic Working Group (HTAD WG ) Chair, Professor Julie DE BACKER.

    More information and link to register here.

    Direct link to register here.

  • Fri
    23
    Apr
    2021
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #45 will take place on April 23rd, 2021 at 8 am (Paris time).

  • Wed
    21
    Apr
    2021
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on April 21st, 2021 at 3:45 pm (Paris time).

  • Mon
    19
    Apr
    2021
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on April 19th, 2021 at 5:30 pm (Paris time).

  • Wed
    14
    Apr
    2021
    10:00AM-11:30AM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on April 14th, 2021 at 10:00 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

  • Wed
    14
    Apr
    2021
    3:00PM-5:00PM (CET)Videoconference call - Webex

    The Integration Working Group Meeting will take place online on April 14th, 2021 at 3:00PM (CET).

  • Mon
    12
    Apr
    2021
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on April 12th, 2021 at 5 pm (Paris time).

  • Fri
    09
    Apr
    2021
    10:00AM-4:00PM (Eastern)Online

    The 4th Scientific Meeting on Vascular Ehlers Danlos Syndrome organised by The DEFY Foundation will be held virtually on April 9th, 2021 from 10:00 am to 4:00 pm Eastern.

    This event is powered by The Marfan Foundation and The VEDS Movement.

    Key areas of focus will be sharing knowledge in basic, translational and clinical aspects of Vascular Ehlers-Danlos syndrome with the goals of developing research directions for advancing therapeutic strategies, development and/or integration of pioneering concepts and theories and establishing collaborations.

    Abstracts are due on February 19th and must be submitted electronically. For the abstract submission, please click here.

    Full program and registration will be available on March 1st, 2021.

    Registration for the meeting will be free.

  • Fri
    09
    Apr
    2021
    12:30PM-1:30PM (CET)Videoconference call - Webex

    The 3rd VASCERN Pregnancy Working Group Meeting will take place online on April 9th, 2021 from 12:30 PM to 1:30 PM (CET).

  • Fri
    09
    Apr
    2021
    2:00PM-3:00PM (CET)Videoconference call - Webex

    The inter ERN Monitoring Working Group will have an online meeting on April 9th, 2021 at 2 PM (CET).

  • Fri
    09
    Apr
    2021
    3:00PM-4:00PM (CET)Videoconference call - Webex

    The VASCERN Registry Technical Teams Working Group Meeting will take place online on April 9th, 2021 from 3 PM to 4 PM (CET).

  • Wed
    07
    Apr
    2021
    10:00AM-12:00PM (CET)Videoconference call - Webex

    The Knowledge Generation WG Meeting will take place on April 7th, 2021 from 10 AM to 12 PM (CET). Natasha Barr (VASCERN Project Officer) will be in attendance.

  • Wed
    31
    Mar
    2021
    9:00AM-1:00PM (CET)Videoconference call - Webex

    The 9th ERN IT Advisory Group Meeting will take place online on Wednesday March 31st, 2021 from 9 AM to 1 PM (CET). Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, will be present at this event.

  • Fri
    26
    Mar
    2021
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #44 will take place on March 26th, 2021 at 8 am (Paris time).

  • Wed
    24
    Mar
    2021
    5:00PM-6:00PM (CET)Zoom Webinar

    VASCERN will hold a webinar on Wednesday March 24th from 5:00-6pm CET on the topic of Infections and Lymphedema with Pediatric and Primary Lymphedema Working-Group (PPL-WG) members Dr. Kirsten VAN DUINEN, Dr. Tanja PLANINŠEK RUČIGAJ, Manuela LOURENÇO MARQUES (ePAG Deputy Co-Chair for PPL) and Pernille HENRIKSEN (ePAG Co-Chair for PPL).

    Please register to join here!

     

    This webinar will include an informative presentation followed by a Q&A session, featuring questions collected from the PPL patient community! Don't miss it!

  • Mon
    22
    Mar
    2021
    10:00AM-12:00PM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on March 22nd, 2021 at 10:00 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

  • Mon
    22
    Mar
    2021
    5:00PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on March 22nd, 2021 at 5 pm (Paris time).

  • Wed
    17
    Mar
    2021
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on March 17th, 2021 at 3:45 pm (Paris time).

  • Mon
    15
    Mar
    2021
    Mon
    26
    Apr
    2021

    The EJP RD Research Mobility Fellowships funding opportunity is open! The call aims to support PhD students, Postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.

    The exchange can be carried out within the same ERN (Full Members and Affiliated Partners), between different ERNs (Full Members and Affiliated Partners) and between ERN Full Members / Affiliated Partners and non-ERN institutions.

    Either home or host (secondment) institution must be a Full Member or Affiliated Partner of an ERN at the time when the application is submitted, as well as during the proposed period of the training stay.

    Successful applicants should acquire new competences and knowledge related to their research on rare diseases, with a defined research plan and demonstrable benefit to the ERN of the home and/or host institution.

    The research mobility fellowships are meant to cover stays of 4 weeks to 6 months duration.

     

     

     

     

     

  • Mon
    15
    Mar
    2021
    2:30PM-3:30PM (CET)Zoom

    The 4th ERN Transversal Study Group on Pregnancy and Family Planning will take place online on March 15th, 2021 at 2:30 PM (CET).

  • Mon
    15
    Mar
    2021
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on March 15th, 2021 at 5:30 pm (Paris time).

  • Wed
    10
    Mar
    2021
    5:00PM-6:30PM (CET)GoToMeeting

    The Internal ERN Coordinators Group Meeting will take place online on March 10th, 2021 at 5:00PM (CET).

  • Tue
    09
    Mar
    2021
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on March 9th, 2021 from 10 am to 11:30 am (Paris time).

  • Mon
    08
    Mar
    2021
    10:00AM-11:30AM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on March 8th, 2021 at 10:00 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

  • Mon
    08
    Mar
    2021
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on March 8th, 2021 at 5 pm (Paris time).

  • Sun
    07
    Mar
    2021

    The third edition of EJP-RD's  ‘ERN RD Training and Support Program‘ has been announced! The aim of this program is to fill the gap in the available educational offer on rare diseases research by creating and implementing a comprehensive and cohesive training program for different target groups such as researchers and young clinicians working at institutions that are Full Members or Affiliated Partners of the European Reference Networks (ERNs). 

    To this end, two main training elements will be delivered: 

    1. Research Training Workshops - now open for applications until March 7th, 2021
    2. Research Mobility Fellowships for secondments outside the home country - to open in February 2021

    For all information on these two calls (including call texts and application forms), visit the EJP-RD page here

  • Sat
    06
    Mar
    2021

    World Lymphedema Day (WLD) will take place on March 6th, 2020! WLD is an annual patient advocate-driven celebration that was officially established by the U.S. Senate in 2016, and since then, has developed into a truly global movement.

    The patient organisations and patient advocates for Pediatric and Primary Lymphedema (PPL) of VASCERN’s European Patient Advocacy Group (ePAG) have many events and activities lined up! Many associations are hosting webinars, sending daily newsletters and creating other events throughout March. You can find more information on the websites or social media profiles of the local associations.

  • Sun
    28
    Feb
    2021

    Rare Disease Day takes place on the last day of February each year. This year it will take place on Sunday February 28th, 2021!

    The main objective of this international event is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

    More information here

  • Fri
    26
    Feb
    2021
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #43 will take place on February 26th, 2021 at 8 am (Paris time).

  • Thu
    25
    Feb
    2021
    3:00PM-4:00PM (CET)Videoconference call - Webex

    A webinar on the latest improvements of the Clinical Patient Management System (CPMS) and the new features will take place on February 25th, 2021 at 3PM (CET). Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, will be present at this online event.

  • Wed
    24
    Feb
    2021
    Online

    The EURORDIS Black Pearl Awards celebrate the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives. The black pearl symbolises these unique individuals, organisations and companies who demonstrate an incredible combination of hard work and dedication in their daily lives. This year, the tenth anniversary special online edition of the EURORDIS Black Pearl Awards will take place during the evening of Wednesday, 24 February 2021.

    More information here

  • Wed
    24
    Feb
    2021
    2:00PM-3:00PM (CET)Videoconference call - Webex

    The inter ERN Monitoring Working Group will have an online meeting on February 24th, 2021 at 2 PM (CET).

  • Tue
    23
    Feb
    2021
    1:30PM-6:30PM (CET)Online

    The Rare 2030 Final Conference will take place online on February 23rd, 2021 from 1:30-6:30PM.

    It will mark the end of the two-year foresight study and will be the occasion to present the Rare 2030 policy recommendations for a new policy framework! An excellent opportunity to learn more about the Rare 2030 recommendations in detail and to learn how to use them for dvocacy, research and development, healthcare and policy work.

    Register here

    Draft agenda available here

  • Mon
    22
    Feb
    2021
    5:00PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on February 22nd, 2021 at 5 pm (Paris time).

  • Fri
    19
    Feb
    2021
    11:00AM-12:00PM (CET)Videoconference call - Webex

    The 2nd VASCERN Pregnancy Working Group Meeting will take place online on February 19th, 2021 from 11 AM to 12 PM (CET).

  • Thu
    18
    Feb
    2021
    3:00PM-4:00PM (CET)Videoconference call - Webex

    The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday February 18th, 2021 from 3 PM to 4 PM (CET).

  • Wed
    17
    Feb
    2021
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on February 17th, 2021 at 3:45 pm (Paris time).

  • Mon
    15
    Feb
    2021
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on February 15th, 2021 at 5:30 pm (Paris time).

  • Tue
    09
    Feb
    2021
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on February 9th, 2021 from 10 am to 11:30 am (Paris time).

  • Mon
    08
    Feb
    2021
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on February 8th, 2021 at 5 pm (Paris time).

  • Fri
    29
    Jan
    2021
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #42 will take place on January 29th, 2021 at 8 am (Paris time).

  • Wed
    27
    Jan
    2021
    5:00PM-6:30PM (CET)GoToMeeting

    The Internal ERN Coordinators Group Meeting will take place online on January 27th, 2021 at 5:00PM (CET).

  • Mon
    25
    Jan
    2021
    3:00PM-6:30PM (CET)Online

    In the context of the EJP RD internal call for innovation projects in clinical trials methodologies in limited populations, that opened on December 7th, 2020 and will close on March 3rd, 2021, an “Information/Networking Event” will be organized on January 25th, 2021. The meeting will take place online from 3 PM to 6:30 PM (CET).

    All interested applicants are invited to participate in this event. 

    The objectives of the meeting are as follows:

    • Presentation of the call modalities and objectives followed by Q&A session with participants
    • Presentation of various perspectives of the remaining challenges that the present call will target (for example in relation to: use of registries, innovation in methodology space, PCOMS, pharmacogenetic biomarkers and pharmacokinetics development, the vision of regulators on future of RD clinical trials, model for innovating therapy in ultra RDs, ethical guidance)
    • Open session for participants to discuss the gaps that they would like to tackle and initiate partnerships among interested parties.

    The registration to the meeting is mandatory and will close on January 18th, 2021.

    Please register here.

    The detailed agenda of the meeting can be found here

    If you have any questions or need help please contact the EJPRD Team at: innovation.callsec@ejprarediseases.org

  • Mon
    25
    Jan
    2021
    5:00PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on January 25th, 2021 at 5 pm (Paris time).

  • Thu
    21
    Jan
    2021
    2:00PM-4:00PM (CET)Videoconference call - Webex

    The Integration Working Group Meeting will take place online on January 21st, 2021 at 2:00PM (CET).

  • Thu
    21
    Jan
    2021
    3:00PM-4:00PM (CET)Videoconference call - Webex

    The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday January 21st, 2021 from 3 PM to 4 PM (CET).

  • Wed
    20
    Jan
    2021
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on January 20th, 2021 at 3:45 pm (Paris time).

  • Mon
    18
    Jan
    2021
    11:30AM-1:30PM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on January 18th, 2021 at 11:30 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

  • Mon
    18
    Jan
    2021
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on January 18th, 2021 at 5:30 pm (Paris time).

  • Wed
    13
    Jan
    2021
    Fri
    15
    Jan
    2021
    Online

    The online IRDiRC Conference & RE(ACT) Congress will take place online from 13-15 January, 2020. Hosted by The BLACKSWAN FOUNDATION, IRDRIC And EJP-RD, this event brings together scientific leaders, patients and policy makers to advance research on rare diseases.

    Register here

    To see the agenda: click here

    To see the time table: click here

    For more information, visit the event website here

  • Tue
    12
    Jan
    2021
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on January 12th, 2021 from 10 am to 11:30 am (Paris time).

  • Mon
    11
    Jan
    2021
    2:00PM-3:30PM (CET)Online

    The Knowledge Generation WG Meeting will take place on Monday 11th January 2021 from 2 PM to 3:30 PM (CET). Natasha Barr (VASCERN Project Officer) will be in attendance.

  • Mon
    11
    Jan
    2021
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on January 11th, 2021 at 5 pm (Paris time).

  • Fri
    08
    Jan
    2021
    5:00PM-6:30PM (CET)Videoconference call - Webex

    The 13th VASCERN Council Meeting will take place on January 8th, 2021 from 5 PM to 6:30 PM (Paris time).

  • Mon
    04
    Jan
    2021
    5:00PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on January 4th, 2021 at 5 pm (Paris time).

  • Mon
    21
    Dec
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on December 21st, 2020 at 5:30 pm (Paris time).

  • Wed
    16
    Dec
    2020
    Fri
    30
    Jul
    2021

    The European Joint Programme on Rare Diseases (EJP RD) Joint Transnational Call (JTC) 2021 has been launched on December 16th, 2020!

    The topic for this next call will be “Social sciences and Humanities Research to improve health care implementation and everyday life of people living with a rare disease”.

    Transnational research proposals must cover at least one of the following areas, which are equal in relevance for this call:

    • Health & social care services research to improve patient and familial/household health outcomes
    • Economic Impact of Rare diseases
    • Psychological and Social Impact of Rare diseases
    • Studies addressing the impact/burden of the delay in diagnosis and of the lack of therapeutic intervention.
    • e-Health in rare diseases: Use of innovative technology systems for care practices in health and social services
    • Development and enhancement of health outcomes research methods in rare diseases
    • Effects of pandemic crisis and the global outbreak alert and response on the rare disease field, and the emergence of innovative care pathways in this regard.

    Each consortium submitting a proposal must involve at least three principal investigator partners from at least three different countries that are joining this Call JTC 2021. The maximum duration of the project is 3 years.

    TIMELINE:

    • February 16th, 2021: Pre-proposal submission deadline
    • End of April 2021: Invitation to full proposal
    • June 15th, 2021: Full proposal submission deadline
    • July 30th, 2021: Deadline for rebuttals
    • November 2021: Notification of funding decision

     

    More information here: https://www.ejprarediseases.org/index.php/ejprd-jtc2021/

  • Wed
    16
    Dec
    2020
    Zoom

    The 3rd ERN Transversal Study Group on Pregnancy and Family Planning will take place online on December 16th, 2020.

  • Wed
    16
    Dec
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on December 16th, 2020 at 3:45 pm (Paris time).

  • Mon
    14
    Dec
    2020
    10:30AM-12:30PM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on December 14th, 2020 at 10:30 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

  • Mon
    14
    Dec
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on December 14th, 2020 at 5 pm (Paris time).

  • Tue
    08
    Dec
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on December 8th, 2020 from 10 am to 11:30 am (Paris time).

  • Mon
    07
    Dec
    2020
    Wed
    03
    Mar
    2021

    The Internal Call for Innovation Project in Clinical Trials Methodology in Limited Populations has been launched on December 7th, 2020. The call is open to EJP RD beneficiaries and their linked third parties.

    The innovation methodologies topics particularly include (but are not limited to):

    • Development of a disease progression model from a natural history cohort or other observational studies.
    • Development and validation of a disease specific clinically meaningful outcome with special interest in PCOMs, or composite endpoints.
    • Development of a design and analysis procedure for a pharmacometric model and/or bridging study.
    • Development of a randomization-based model as an alternative analysis strategy and explore the level of evidence.

    The call aims to encourage collaborations among groups of experts consisting of different stakeholders including methodological experts, clinicians, patients and industry (when relevant) who will jointly develop innovative ready-to-use methods to enhance RD clinical trial methodologies.

    TIMELINE:

    • January 11th, 2021: A networking meeting will be held to consolidate the collaborative networks.
    • March 3rd, 2021: Foreseen call closing deadline.

     

    To get more information click here: https://www.ejprarediseases.org/index.php/ongoing-calls/innovation-project/

  • Mon
    30
    Nov
    2020
    9:00AM-1:00PM (CET)Online

    The European Medicines Agency (EMA) is organising a Workshop on Support for Orphan Medicines Development which will take place online on November 30th, 2020 from 9AM-1pm.

    This virtual event aims to encourage early and efficient interactions with the regulators by highlighting pre-marketing support in medicine development in rare diseases. Existing tools such as orphan designation, protocol assistance and PRIME scheme will be highlighted and explained in the context of early product development strategy.

    For the agenda click here

    To register click here

    For more information click here

  • Fri
    27
    Nov
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #41 will take place on November 27th, 2020 at 8 am (Paris time).

  • Fri
    27
    Nov
    2020
    9:00AM-4:00PM (CET)Videoconference call - Webex

    The ERN Coordinators Group Meeting will take place online on November 27th, 2020 from 9 AM to 4 PM (CET). Professor Jondeau and Marine Hurard will be attending.

  • Thu
    26
    Nov
    2020
    3:00PM-4:00PM (CET)Videoconference call - Webex

    The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday November 26th, 2020 from 3 PM to 4 PM (CET).

  • Wed
    25
    Nov
    2020
    5:00PM-6:30PM (CET)Videoconference call - Webex

    The Internal ERN Coordinators Group Meeting will take place online on November 25th, 2020 at 5:00PM (CET).

  • Mon
    23
    Nov
    2020
    11:00AM-12:30PM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on November 23rd, 2020 at 11 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

  • Mon
    23
    Nov
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on November 23rd, 2020 at 5 pm (Paris time).

  • Fri
    20
    Nov
    2020
    2:00 pmZoom

    The joint ERN ReCONNET and VASCERN webinar on cardiovascular aspects of Ehlers-Danlos syndrome (EDS) will take place on November 20th, 2020 at 2 PM (CET).

    Medium-Sized Arteries Working Group (MSA-WG) Chair, Dr. Leema Robert, and MSA-WG (and ERN ReCONNET) member Dr. Fransiska Malfait will discuss the various types of EDS with cardiovascular manifestations, including vascular EDS!

    To register, click here.

  • Thu
    19
    Nov
    2020
    7:00PM (ET)Online

    The GenTAC Aortic Summit Highlights Webinar will take place on Thursday, November 19, at 7 pm ET (1am CET - webinar will be recorded).

    This webinar will give an overview of the highlights from the GenTAC Aortic Summit 2020 with Kim Eagle, MD, GenTAC Chair, and Josephine Grima, PhD, Chief Science Officer for The Marfan Foundation, presenting. It is a great opportunity for the patient community to learn what researchers around the world discussed at the recent scientific meeting, which included topics on familial aortopathy, Marfan syndrome, VEDS, chronic aortic aneurysms, exercise and Marfan syndrome, aortic surgery, and more.

    Register to attend the live webinar, or to receive the recording of the webinar, here

  • Wed
    18
    Nov
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on November 18th, 2020 at 3:45 pm (Paris time).

  • Mon
    16
    Nov
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on November 16th, 2020 at 5:30 pm (Paris time).

  • Fri
    13
    Nov
    2020
    11:00AM-12:00PM (CET)Zoom

    The 1st VASCERN Pregnancy Working Group Meeting will take place online on November 13th, 2020 from 11 AM to 12 PM (CET).

  • Mon
    09
    Nov
    2020
    Fri
    13
    Nov
    2020
    Online

    The International Congress on the Effects of COVID19 on People with Rare Diseases, organised by Share4Rare, will be held online on November 9th, 11th and 13th, 2020.

    The congress arises from the recent creation of the international registry of patients with rare diseases and COVID-19, which aims to improve the current knowledge of the effects of this new infectious disease in rare disease patients. The initiative is fostered by Share4Rare, aimed at connecting and educating families affected by rare diseases, as well as promoting collaborative research through the sharing of clinical information from relatives and patients.

    Register here

    Access the full agenda  here

  • Mon
    09
    Nov
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on November 9th, 2020 at 5 pm (Paris time).

  • Thu
    05
    Nov
    2020

    The Connecting Europe Facility (CEF) Telecom -2020-2 eHealth call (implemented by The Innovation and Networks Executive Agency (INEA)) was published on June 30th, 2020!

    Read the call document here

    The actions funded under this call for proposals should contribute to:

    • The continued use of the ERN Collaborative Platform (ECP) and of the Clinical
      Patient Management System (CPMS), which facilitate access to highly
      specialised knowledge and care for patients suffering from rare and complex
      diseases.
    • The improvement of current functionalities and adding of new functionalities to
      the ERN Clinical Patient Management System, which will enhance the possibility
      to collect and analyse clinical data across borders to support public health and
      research, and also better adapt the CPMS to the ERN specific clinical needs.
    • The promotion of the European Reference Networks within the medical
      community by suitable learning and training activities.

     

    Deadline for submission of proposals is Thursday 5 November 2020 (5PM Brussels time).

    Evaluation of proposals November 2020 – January 2021 (indicative)

    Consultation of the CEF Committee March – April 2021 (indicative)

    Adoption of the Selection Decision April 2021 (indicative)

    VASCERN will be submitting a proposal in order to ensure the continuation and improvement of the IT services offered to our members (helpdesk, eLearning activities, monitoring system support, and other IT related activities).

    A 2020-2 CEF Telecom call virtual Info Day will occur on 16 July 2020.

    More information on the call can be found here

  • Thu
    05
    Nov
    2020
    3:00PM-4:00PM (CET)Videoconference call - Webex

    The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday November 5th, 2020 from 3 PM to 4 PM (CET).

  • Wed
    04
    Nov
    2020
    5:00PM-6:30PM (CET)GoToMeeting

    The Internal ERN Coordinator's Group Meeting will take place online on November 4th, 2020 at 5:00PM (CET).

  • Wed
    28
    Oct
    2020
    2:00PM-3:30PM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on October 28th, 2020 at 2:00 PM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

  • Tue
    27
    Oct
    2020
    10:00AM-12:30PM (CET)Videoconference call - Webex

    The 8th ERN IT Advisory Group Meeting will take place online on Tuesday October 27th, 2020. Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, will be present at this event.

  • Thu
    22
    Oct
    2020
    Sat
    24
    Oct
    2020
    Online

    Due to the COVID-19, VASCERN's annual seminar, VASCERN Days 2020, will take place online from October 22-24th, 2020!

    This year, we will come together using the Whova event app and Webex for our virtual meeting sessions.

    We look forward to welcoming our participants to this online 3-day seminar! Currently we are expecting 76 Healthcare Provider (HCP) representatives, 12 representatives from our 7 Affiliated Partners and 22 European Patient Advocate Group (ePAG) patient advocates, as well as 35 invited stakeholders representing DG SANTE (European Commission), FAVA-Multi (The French Network for Rare Vascular Diseases)Eurordis, members of our VASCERN Registries Project team, EJP-RDthe French Ministry of HealthAP-HP Bichat Hospital and more!

    Access the full, detailed program here

     

    An overview of the agenda for this 3-day online seminar can be seen below:

    Day 1: Thursday, October 22nd

    8.45-12.05 VASCERN ANNUAL BOARD MEETING

    9.00-9.20 VASCERN’s Management & Coordination

    9.20-9.35 VASCERN’s Enlargement & Cooperations

    9.35-9.45 Inter-ERN Working Group on Legal & Ethical Issues and Relations with Stakeholders: cooperation with the industry

    10.00-11.00 Work Packages

    10.00-10.35 Implementation (7’ per RDWG Chair)

    10.35-11.00 Q&A, sharing best practices & inter-RDWGs projects

    11.00-11.15 Q&A and approval by the Board

    11.30-11.45 European Patient Advocacy Group (ePAG) views, projects & new developments, including Q&A

    11.45-12.05 Clinical Patient Management System (CPMS)

    13.00-16.00 RARE DISEASE WORKING GROUPS - PARALLEL SESSIONS

    Including 14.30-16.00: RDWGs CPMS clinical case discussions (clinicians only)

    16.00-16.15 Council meeting (Chairs only) to select the 5 topics for the Day 2 Brainstorming plenary session

    Day 2: Friday, October 23rd

     8.30-9.00 Research: European Joint Programme on Rare Diseases (EJP RD): calls and opportunities & Q&A

    9.15-9.45 VASCERN’s Registry WG

    10.00-11.00 Brainstorming on 5 strategic topics selected by the RDWGs (12’by topic, each topic discussion moderated by the Chair of the RDWG)

    11.45-12.15 Pregnancy Working Group chaired by Julie De Backer

    13.00-16.00 RARE DISEASE WORKING GROUPS - PARALLEL SESSIONS, including interRDWG sessions

    16.00-16.30 Board plenary: RDWGs’sessions summary outcomes & introducing the way forward (6’ per RDWG)

    Day 3: Saturday, October 24th

     9.00-12.00 PPL & VASCA WORKING GROUPS - PARALLEL SESSIONS

    PPL: CPMS Clinical Case Discussions (clinicians only)

    VASCA: Implementation of Work Packages

     12.30-13.30 - European Patient Advocacy Group (ePAG) separate wrap-up

  • Thu
    15
    Oct
    2020
    3:00PM-4:00PM (CET)Videoconference call - Webex

    The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday October 15th, 2020 from 3 PM to 4 PM (CET).

  • Tue
    13
    Oct
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on October 13th, 2020 from 10 am to 11:30 am (Paris time).

  • Fri
    09
    Oct
    2020
    4:00PM-5:30PM (CEST)GoToMeeting

    The 2nd cross-ERN surgical based Working Group Meeting will take place online on October 9th, 2020 at 4:00 PM (CEST).

  • Thu
    08
    Oct
    2020
    Sat
    10
    Oct
    2020
    Online

    Registration is now open for the GenTAC Aortic Summit 2020, one of the premier meetings in the world focused on sharing knowledge and advancing research on genetic aortic disease!

    The meeting, which is specifically for scientists and clinicians, will be virtual, with presentations on-demand beginning September 29, 2020 and live discussions on October 8 and 10, 2020.

    The Call for Abstracts for the Aortic Summit is available as well. Abstracts for innovative research and clinical topics related to advancing therapeutic strategies and management should be submitted by September 11. Six abstracts will be chosen for live presentation on Thursday, October 8, from 7:30 - 8:30 pm, during our Cocktails and Posters session. All other abstracts will be available for viewing in our exhibit hall where questions and answers can be posted.

    The GenTAC Aortic Summit, a biennual event, originated in 2009 as part of the mission of the National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Related Conditions (GenTAC). Its objective are to share current knowledge of the scientific underpinnings of genetic aortic disease; review current best practices related to diagnosis and treatment; and foster scientific and educational exchange.

    Professor Guillaume Jondeau (VASCERN coordinator) will give an update of the VASCERN registry during the "Registry Update" session on October 10th, 2020.

    For more information and to register for the GenTAC Aortic Summit 2020, please click here.

    For the full schedule please click here

    Please find the full announcement here

    If you have questions, please email GenTAC@marfan.org

     

     

     

     

  • Tue
    06
    Oct
    2020
    10:30AM-12:00PM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on October 6th, 2020 at 10:30 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

  • Mon
    28
    Sep
    2020
    Fri
    02
    Oct
    2020
    Online

    An international training course titled "International Summer School on Rare Disease Registries and FAIRification of Data”, Istituto Superiore di Sanità, Rome, Italy, will occur online from September 28th to October 2nd, 2020.

    This initiative is a part of a series of training courses included in the framework of the European Joint Programme on Rare Diseases (EJP RD). For more information about the EJP RD, have a look here: https://www.ejprarediseases.org/

    The 5 days training course is composed of two modules, the first three days on Rare Disease Registries and the final two days on FAIRification of Data. You can attend a single training module or the entire training course.

    Online registration until July 19th, 2020: https://sondage.inserm.fr/index.php/257338/lang-en

    Programme and other information: https://www.ejprarediseases.org/wp-content/uploads/2020/06/EJP-RD_Summer-School-RD-RegistriesFAIRification.pdf

    Important dates, deadlines, and further information: https://www.ejprarediseases.org/index.php/international-summer-school-on-rare-disease-registries-and-fairification-of-data-2/

  • Mon
    28
    Sep
    2020

    The second European Joint Programme on Rare Diseases (EJP RD) Research Training Workshop Call is now open (from August 31st - September 28th, 2020)!

    The goal of the workshops is to train researchers and clinicians affiliated to ERN-Full  Members or Affiliated Partners in relevant topics on rare diseases research. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Providing a cross-ERN added value is highly desired.

    The workshops will be delivered as two-day events. Topics can be proposed by clinicians/investigators affiliated to ERN-institutions or EJP RD beneficiaries.  As of 2021, there will be two deadlines for workshop topic applications per year, in January and June.

    Topics will be selected taking into consideration several elements such as:

    • Addressing cross-cutting issues relevant for ERNs
    • Multidisciplinary topics
    • Fostering collaboration (within and between ERNs)
    • No overlap with other EJP RD training activities
    • Relevance of the topic for the ERN(s)
    • Benefits for the RD community
    • Appropriate training methodology

    The workshops selected for funding will be attended only by individuals affiliated to ERN institutions. Participants will be selected by the coordinator of the ERN managing institution and the workshop organizer based on pre-defined criteria. The costs for the workshop organization will be covered up to a limit of € 25,000.

    Applicants/Application profile:

    The applicant submitting workshop topics must fit one of the following:

    • Affiliated to any EJP RD beneficiary institution. The list of EJP RD beneficiary organizations can be found here 
    • Affiliated to an ERN full member. The list of full ERN members per country and per network can be found here
    • Affiliated to an ERN Affiliated Partner institution at the time when the application is submitted, as well as during the period of the execution of the workshop.

     

    Deadline to apply is September 28th, 2020

    For the full call text please click here

    More information on the call here

  • Mon
    28
    Sep
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on September 28th, 2020 at 5 pm (Paris time).

  • Fri
    25
    Sep
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #39 will take place on September 25th, 2020 at 8 am (Paris time).

  • Thu
    24
    Sep
    2020
    2:00PM-5:00PM (CET)Videoconference call - Webex

    The ERNs Indicator Webinar will occur online on September 24th, 2020 from 2 PM to 5 PM (CET).

  • Wed
    23
    Sep
    2020
    2:00PM-3:30PM (CET)Videoconference call - Webex

    The next inter-ERN Knowledge Generation Working Group Meeting will be held on September 23rd, 2020 from 2 PM to 3:30 PM (CET). Natasha Barr (VASCERN Project Officer) will be in attendance.

  • Tue
    22
    Sep
    2020
    12:00PM-17:25PM (CET)Adobe

    The European Medicines Agency (EMA) is organising a virtual workshop on benefit-risk of medicines used during pregnancy and breastfeeding on September 22nd, 2020 from 12 PM to 17:25 PM (CET).

  • Mon
    21
    Sep
    2020
    10:30AM-12:00PM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on September 21st, 2020. Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

  • Mon
    21
    Sep
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on September 21st, 2020 at 5:30 pm (Paris time).

  • Sat
    19
    Sep
    2020
    Sat
    26
    Sep
    2020
    Worldwide

    Aortic Dissection Awareness Week will take place from September 19-26, 2020 and is a week to raise awareness about aortic disease around the world. It is a day to create community for people who care about aortic disease, to celebrate survivors, and to share life-saving information in order to reach people who are at risk.

    Many events will be taking place around the world, such as a free virtual conference by the John Ritter Foundation and the Genetic Aortic Disorders Association Canada- register here

    You can also raise your hands for Aortic Disease Awareness here

    For more information, follow the AD Awareness week Facebook page here

  • Fri
    18
    Sep
    2020
    5:00PM-5:30PM (CET)Videoconference call - Webex

    The 12th VASCERN Council Meeting special VASCERN Days 2020 will take place online on September 18th, 2020 at 5 PM (CET).

  • Fri
    18
    Sep
    2020
    9:00AM-12:00PM (CET)Videoconference call - Webex

    The Joint brainstorming session of the ERN Board of Member States and ERN Coordinators Group will occur online on Friday September 18th, 2020 from 9 AM to 12 PM (CET).

  • Wed
    16
    Sep
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on September 16th, 2020 at 3:45 pm (Paris time).

  • Tue
    15
    Sep
    2020
    2:30PM-3:30PM (CET)Zoom

    The 2nd ERN Transversal Study Group on Pregnancy and Family Planning will take place online on September 15th, 2020 at 2:30 PM (CET).

  • Mon
    14
    Sep
    2020
    Fri
    18
    Sep
    2020
    Online

    The European Joint Programme on Rare Diseases (EJP RD)'s second General Assembly and Consortium meeting will take place from 14 to 18 September 2020. Due to Covid-19, the 2020 GA meeting will be held online.

  • Mon
    14
    Sep
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on September 14th, 2020 at 5 pm (Paris time).

  • Tue
    08
    Sep
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on September 8th, 2020 from 10 am to 11:30 am (Paris time).

  • Wed
    02
    Sep
    2020
    6:00PM-7:30PM (CET)Videoconference call - Webex

    The 11th VASCERN Council Meeting will take place on September 2nd, 2020 from 6 pm to 7:30 pm (Paris time).

  • Tue
    01
    Sep
    2020

    The Call for the Research - European Joint Programme on Rare Diseases (EJP RD) Networking Support Scheme (NSS) is now open!

    The scheme will provide financial support to applicants for fostering organization of workshops or conferences for new research networks or existing/expanding research networks to strengthen collaborations and to enable exchange of knowledge.

    Eligible applicants to apply for the NSS are health care professionalsresearchers and patient advocacy organizations from the following countries involved in the EJP RD (in alphabetical order):

    Armenia*, Austria, Belgium, Bulgaria*, Croatia*, Czech Republic*, Denmark, Estonia*, Finland, France, Germany, Georgia*, Greece, Hungary*, Ireland, Israel, Italy, Latvia*, Lithuania*, Luxembourg, Malta*, Norway, Poland*, Portugal, Romania*, Serbia*, Slovakia*, Slovenia*, Spain, Sweden, Switzerland, The Netherlands, Turkey*, United Kingdom.

    The countries that are indicated with an asterisk (*) are usually seen as underrepresented countries.

    At least one Principal applicant and two co-applicants from three different countries mentioned above have to apply together for support of a Networking event.

    Maximum budget for networking event: € 30,000

    The NSS is open on a continuous basis. The applications will be collected on the following dates:

    • June 2, 2020 at 14:00 (CEST)
      IMPORTANT. This collection date is cancelled due to the COVID-19 outbreak.
    • September 1, 2020 at 14:00 (CEST)
      IMPORTANT. Exceptional extension in comparison to Call text: events may be organised between 6 and 18 months after the application date.
    • December 1, 2020 at 14:00 (CET)

    All information, including the call documents, can be found on the EJP-RD website here.

  • Sat
    29
    Aug
    2020
    Tue
    01
    Sep
    2020
    Online

    The European Society of Cardiology (ESC) Congress 2020 will take place online from August 29th to September 1st, 2020.

    For more information visit the event's website here.

  • Fri
    28
    Aug
    2020
    4:30PM-6:00PM (CEST)GoToMeeting

    The 1st cross-ERN surgical based Working Group Meeting will take place online on August 28th, 2020 at 4:30 PM (CEST).

  • Tue
    25
    Aug
    2020
    Sat
    12
    Sep
    2020
    Online

    VASCERN has partnered with The Marfan Foundation to co-lead the upcoming online E3 International Summit: Educating, Empowering, and Enriching Our Community, which will run from Tuesday, August 25th – Saturday, September 12th, 2020 and will feature medical experts from all over the world on a variety of topics related to the diagnosis and treatment of Marfan syndrome, Loeys-Dietz syndrome (LDS), vEDS (Vascular Ehlers-Danlos syndrome), and related conditions.

    CLICK HERE TO REGISTER NOW!

    Members of the Heritable Thoracic Aortic Diseases (HTAD) and Medium-Sized Arteries (MSA) Working Groups, along with other world renowned experts, will offer live online presentations and question and answer sessions. A selection of quality of life presentations will also be on the schedule in order to complement the medical information. In order to make this program accessible to a larger international audience, medical presentations will be available in six languages: English, Spanish, Italian, French, German, and Dutch.

    Highlights include:

    • The ABCs of Marfan in six different languages
    • Research talks that address recent breakthroughs and hope for the future
    • Several specialized talks on each of the following: Marfan, VEDS, Loeys-Dietz, Stickler Syndrome, and Heritable Thoracic Aortic Conditions
    • A focus on treating and coping with pain, with presentations on pain management, building resiliency, physical therapy, and medical marijuana
    • Presentations on pregnancy, foot and ankle pain, eye issues, dental concerns, lung issues, and more
    • Talks on topics that can enhance quality of life, such as the healing power of laughter, art therapy, and mental fortitude
    • Presentations that address children’s medical issues related to Marfan, VEDS, and Loeys-Dietz, as well as how to deal with your child’s school, anti-bullying techniques, and preparing your child for surgery
    • Opportunities to connect with other people in the worldwide community through the Summit app

     

    See the full agenda here

    For the latest information on this event, visit the event page on the Marfan Foundation website here

  • Mon
    24
    Aug
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on August 24th, 2020 at 5 pm (Paris time).

  • Wed
    19
    Aug
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on August 19th, 2020 at 3:45 pm (Paris time).

  • Fri
    24
    Jul
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #38 will take place on July 24th, 2020 at 8 am (Paris time).

  • Thu
    23
    Jul
    2020
    9AM-1PM (CET)Videoconference call - Webex

    The ERN Project Managers Meeting (part 2) will take place on Thursday July 23rd, 2020 at 9AM (Paris time).

  • Mon
    20
    Jul
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on July 20th, 2020 at 5:30 pm (Paris time).

  • Thu
    16
    Jul
    2020
    9:30AM-2:10PM CETVideoconference call - Webex

    The 2020-2 CEF Telecom call virtual Info Day will take place on Thursday 16 July 2020 and will cover seven priorities of the 2020 CEF Telecom calls that opened on June 30th, 2020.

    Register here

    For agenda and more information, visit the event page here

  • Wed
    15
    Jul
    2020
    Fri
    17
    Jul
    2020
    Kartause Ittingen, Warth

    The 8th Rare Diseases Summer School organized by radiz – Rare Disease Initiative Zurich, which will take place in the Kartause Ittingen, Warth (Canton Thurgau; close to Zurich) from July 15th to July 17th 2020.

    The Summer School will contain lectures by national and international rare disease experts, workshops, and poster presentations by participants.
    A high faculty-to-student ratio will allow participants to optimally benefit from the varied expertise of the faculty.

    For more information, go to their website.

  • Wed
    15
    Jul
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on July 15th, 2020 at 3:45 pm (Paris time).

  • Wed
    15
    Jul
    2020
    9AM-1PM (CET)Videoconference call - Webex

    The ERN Project Managers Meeting (part 1 of 2) will take place on Wednesday July 15th, 2020 at 9AM. Marine Hurard, VASCERN Project Manager, will be in attendance at this event.

  • Tue
    14
    Jul
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on July 14th, 2020 from 10 am to 11:30 am (Paris time).

  • Thu
    09
    Jul
    2020
    2:30PM-3:30PM (CET)Videoconference call - Webex

    The VASCERN Registry WG Kick-Off Meeting will take place online on July 9th, 2020 at 2:30 pm (Paris time).

  • Mon
    06
    Jul
    2020
    3:30PM-4:30PMVideoconference call - Webex

    The 1st ERN Transversal Study Group on Pregnancy and Family Planning will take place on Monday July 6th, 2020 at 3:30PM CET.

    This new ERN Study Group will allow for the creation of strong synergies with already existing initiatives as well as promote a transversal approach to the important topic of pregnancy and family planning in all rare and complex diseases. Members of VASCERN (Professor Julie De Backer (HTAD WG Chair) and Doctor Leema Robert (MSA WG Chair)) will be in attendance at this event along with members from at least 18 other ERNs.

  • Fri
    26
    Jun
    2020
    9:00AM-1:30PM (CET)Videoconference call - Webex

    This year, the annual FAVA-Multi (The French Network for Rare Vascular Diseases) Day will take place online from 9AM-1:30PM on Friday June 26th, 2020.

    VASCERN Project manager, Marine Hurard, will give a short presentation on the latest VASCERN and ERN news and will answer any questions.

  • Thu
    25
    Jun
    2020
    2:00PM-5:00PM (CET)Videoconference call - Webex

    Due to the COVID-19, the VASCERN MSA-WG Meeting will now take place online. The meeting will occur on June 25th, 2020 from 2 pm to 5 pm (Paris time).

  • Mon
    22
    Jun
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on June 22nd, 2020 at 5 pm (Paris time).

  • Thu
    18
    Jun
    2020
    4:30PM-6:00PM (CET)Zoom

    EURORDIS will organise a webinar on June 18th from 16.30 to 18.00 (CEST) to provide an opportunity to have a preliminary discussion on what are the data needs of the ERNs and how to progress towards a comprehensive ERN data strategy.

    The webinar is open to ePAG advocates, RD National Alliances and EU Federations, ERN Coordinators and Project Managers, Hospital Managers, European Commission and all interested in attending.

    Please register using the following link: https://us02web.zoom.us/webinar/register/WN_-cl6DH9lQLe-15MHOPJp0w 

  • Wed
    17
    Jun
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on June 17th, 2020 at 3:45 pm (Paris time).

  • Wed
    17
    Jun
    2020
    9:00AM-12:30PM (CET)Videoconference call - Webex

    Professor Jondeau and Marine Hurard will be attending the ERN Coordinators Group Meeting, which will occur online on June 17th, 2020.

  • Mon
    15
    Jun
    2020
    6:30PM-8:00PM (CET)Videoconference call - Webex

    The Internal ERN Coordinator's Group Meeting will take place online on June 15th, 2020 at 6:30PM.

  • Fri
    12
    Jun
    2020
    9:00AM-12:30PM (CET)Videoconference call - Webex

    Due to the COVID-19, the VASCERN HHT-WG Meeting will now take place online. The meeting will occur on June 12th, 2020 from 9 am to 12:30 pm (Paris time).

  • Tue
    09
    Jun
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on June 9th, 2020 from 10 am to 11:30 am (Paris time).

  • Tue
    09
    Jun
    2020
    11:00AM-12:00PM (CET)WebEX

    In the context of COVID-19 pandemic and launching of the ‘COVID-19 Clinical Management Support System’, DG SANTE has been organising a series of webinars to support clinicians and other healthcare professionals at the frontline who treat the patients with COVID-19.

    The webinar: "Impact of COVID 19 for people living with a Rare Disease" will take place on Tuesday, June 9th, 2020 from 11.00 – 12.00 CET and will feature speakers from EURORDIS (Inés Hernando, ERN and Healthcare Director and Sandra Courbier, Social Research Director). The results of the latest Rare Barometer Survey, "Rare disease patients' experience of COVID-19", will be presented!

    To join the webinar, click the following link: https://europaevent.webex.com/europaevent/onstage/g.php?MTID=ee90be256b3426dd2ef596106f27bdc45

    meeting ID (access code) (if requested): 956 694 201

    For agenda and more technical information on how to join, click the link here.

  • Thu
    04
    Jun
    2020
    Fri
    05
    Jun
    2020
    Videoconference call - Webex

    Due to the COVID-19, the VASCERN PPL-WG Meeting will now take place online. There will be NO on-site event in Helsinki. The meeting will occur from June 4th to 5th, 2020 from 9 am to 12 pm (Paris time).

  • Wed
    03
    Jun
    2020
    6:00PM-7:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on June 3rd, 2020 at 6 pm (Paris time).

  • Mon
    25
    May
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on May 25th, 2020 at 5 pm (Paris time).

  • Wed
    20
    May
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on May 20th, 2020 at 3:45 pm (Paris time).

  • Mon
    18
    May
    2020
    Tue
    19
    May
    2020
    Online

    The Rare Diseases International (RDI) 6th Annual Meeting will be hosted completely online from May 18th to 19th, 2020. This event will bring together rare disease patient organisations from Latin America, North America, Europe, Asia and Africa to learn from each other and carry the voice of patients from their disease areas, countries and regions.

    For more information on this event and to see the programme, click here.

  • Thu
    14
    May
    2020
    Fri
    15
    May
    2020
    Videoconference

    Due to the COVID-19 novel coronavirus pandemic, the International Society for the Study of Vascular Anomalies (ISSVA) 23rd Workshop for the Study of Vascular Anomalies, that was scheduled to take place in Vancouver, British Columbia, Canada from May 12-15, 2020 has been postponed by two full years, to 10-13 May 2022

    In place of an in-person meeting in 2020, there will be an ISSVA Online Workshop on the Thursday and Friday of the original meeting dates: 14-15 May 2020!

    The Scientific Program will be based on the in-person meeting's program and will be a venue to present the latest advances in research and science in vascular anomalies. ISSVA Online will provide a multidisciplinary forum for many specialties including - but not limited to - interventional radiologists, dermatologists, plastic surgeons, ENT surgeons, oncologists, pediatricians, pediatric surgeons, and pathologists.

    Members of the Vascular Anomalies (VASCA) Working Group will attend this online event and various posters by the group will be presented.

    Click here to register.

    If you have already registered for the ISSVA 2020 (Vancouver) in person meeting, you can transfer your registration fees to the ISSVA Online Workshop by using the below survey: Transfer your ISSVA 2020 (Vancouver) Registration to the Online Workshop.

    More information on the ISSVA Online Workshop here.

  • Thu
    14
    May
    2020
    Fri
    15
    May
    2020
    100% Online

    In the context of the current COVID-19 pandemic and in line with WHO guidelines, the upcoming ECRD will now take place ONLINE from May 14th to 15th, 2020. There will be NO on-site event in Stockholm. 

    More information here.

    ECRD is a biennial event that has allowed the rare disease community to gather since 2001 to monitor and benchmark relevant initiatives, drive the policy framework around rare disease diagnosis, treatment and care and empower the rare disease community to drive change where it is needed most. Outputs from these conferences have informed national and local policy initiatives and are referenced in decision-making around the provision of services for the community.

    The overarching theme for this conference is The rare disease patient journey in 2030. 

    The European Joint Programme on Rare Diseases serves as official partner of the conference and VASCERN is proud to be an Associate Partner of this event.

    Submissions for poster abstracts are open until February 10th, 2020. More information here.

    Applications for the Patient Advocate Fellowship Programme are open until December 2nd, 2019. More information here.

    For more information on this event, take a look at the official ECRD website or the ECRD LinkedIn page.

  • Thu
    14
    May
    2020
    5:30PM-7:00PM (CET)Videoconference call - Webex

    VASCERN will hold a webinar on Thursday May 14, 2020 from 5:30-7pm CET on Heritable Thoracic Aortic Diseases (HTAD) and Covid-19.

    This webinar features a brief introduction on COVID-19 and the cardiovascular system, followed by a Q&A session!

    Elena De Moya Rubio (ePAG Co-Chair for HTAD) and Françoise Steinbach (ePAG Deputy Co-Chair for HTAD) will ask the questions provided by HTAD patients (collected by Elena) and they will be answered by HTAD WG Chair and Co-Chair, Prof. Julie De Backer and Prof. Guillaume Jondeau.

    The webinar will take place on the WebEx platform. To receive the WebEx link to connect to the webinar (or to receive the recording), please register below:

    VASCERN webinar: HTAD and COVID-19 - Q&A session

    Please note all personal data collected will only be used to send the links and will be deleted after the webinar.

  • Tue
    12
    May
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on May 12th, 2020 from 10 am to 11:30 am (Paris time).

  • Tue
    28
    Apr
    2020
    Wed
    29
    Apr
    2020
    9:00AM-13:00PM (CET)Videoconference call - Webex

    Due to the COVID-19, the VASCERN VASCA-WG Meeting will now take place online. There will be NO on-site event in Brussels. The meeting will occur from April 28th to 29th, 2020 from 9 am to 13 pm (Paris time).

  • Mon
    27
    Apr
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on April 27th, 2020 at 5 pm (Paris time).

  • Wed
    22
    Apr
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN Communication Advisory Task Force Meeting will take place online on April 22nd, 2020 at 5:30 PM (CET).

  • Mon
    20
    Apr
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on April 20th, 2020 at 5:30 pm (Paris time).

  • Wed
    15
    Apr
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on April 15th, 2020 at 3:45 pm (Paris time).

  • Tue
    14
    Apr
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on April 14th, 2020 from 10 am to 11:30 am (Paris time).

  • Tue
    31
    Mar
    2020
    Videoconference call - Webex

    The 7th ERN IT Advisory Group Meeting will take place online on Tuesday March 31st, 2020. Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, will be present at this event.

  • Fri
    20
    Mar
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #36 will take place on March 20th, 2020 at 8 am (Paris time).

  • Mon
    16
    Mar
    2020

    The European Joint Programme on Rare Diseases (EJP RD) Research Mobility Fellowship call aims to financially support young investigators to undertake short scientific visits (secondments) fostering specialist research training outside their countries of residence and within one of the ERN host institutions. The research mobility fellowships cover stays of 2 weeks up to 3 months.

    Target: PhD students and young Medical Doctors (having finished their first year of specialist training)

    Applicants’ profile: PhD students with a minimum of one year of research experience OR Physicians having finished their first year of specialist training AND Affiliated to an ERN institution.

    Deadline for submissions: March 16th, 2020

    For application forms and all other information on this call, go to the EJP-RD info page here.

  • Mon
    16
    Mar
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on March 16th, 2020 from 5:30 pm to 6:30 pm (Paris time).

  • Wed
    11
    Mar
    2020
    6:00PM-7:00PM (CET)Videoconference call - Webex

    The 10th VASCERN Council Meeting will take place on March 11th, 2020 from 6 pm to 7 pm (Paris time).

  • Tue
    10
    Mar
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on March 10th, 2020 from 10 am to 11:30 am (Paris time).

  • Fri
    06
    Mar
    2020
    Worldwide

    World Lymphedema Day 2020 will take place on March 6th, 2020.

    This annual advocate-driven celebration aims to raise awaresness for all types of lymphatic diseases, primary and secondary lymphedema, lipedema, lymphatic filariasis, lymphatic malformations, and the full lymphatic continuum of diseases impacted by the lymphatic system.

    In preparation of this international event, the patient advocates of our European Patient Advocacy Group (ePAG) for Pediatric and Primary Lymphedema (PPL) have created various important documents, including:

    More information on the World Lymphedema Day website here.

  • Wed
    04
    Mar
    2020
    6:00PM-7:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on March 4th, 2020 at 6 pm (Paris time).

  • Mon
    02
    Mar
    2020

    The European Joint Programme on Rare Diseases (EJP RD) Research Training Workshops call aims to identify the most suitable topics for the organization of research training workshops with a cross-ERN added value. Financing covers the organization of a 2 days workshop (e.g. venue, catering & travel and accommodation of speakers and participants).

    Target: Researchers/Medical Doctors

    Applicant’s profile: Affiliated to an EJP RD beneficiary institution OR to an ERN-Full Member OR ERN-Affiliated Partner institution

    Deadline for submissions: March 2nd, 2020

    For application forms and all other information on this call, go to the EJP-RD info page here.

  • Sat
    29
    Feb
    2020
    Worldwide

    Rare Disease Day Poster

    The 13th edition of the Rare Disease Day will be held on February 29th, 2020 worldwide!

    For this international day initiated by EURORDIS - European Rare Diseases Organisation, the French networks for rare diseases (including FAVA-multi) will be reaching out to the general public by organising various events to raise awareness in cities across France. VASCERN will attend their event happening in Paris, along with several other ERNs coordinated in Paris (including EuroBloodNet and ERN ITHACA)...more details to follow!

    The communications material for Rare Disease day is available on here.

  • Fri
    28
    Feb
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #35 will take place on February 28th, 2020 at 8 am (Paris time).

  • Mon
    24
    Feb
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will be taking place on February 24th, 2020 from 5 pm to 6 pm (Paris time).

  • Thu
    20
    Feb
    2020
    11:00AM-12:00PM (CET)Videoconference call - Webex

    The first meeting of the Knowledge Generation Working Group of 2020 will be held on February 20th, 2020 at 11 am.

  • Wed
    19
    Feb
    2020
    Brussels, Belgium

    The 29th EURORDIS Round Table of Companies Workshop will take place on February 19th, 2020 in Brussels, Belgium. It will be a full-day workshop dedicated to the topic of medicines’ repurposing.

    To register and for more information on this event, click here

  • Wed
    19
    Feb
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will be taking place on February 19th, 2020 from 3:45 pm to 5 pm (Paris time).

  • Wed
    19
    Feb
    2020
    5:30PM-7:00PM (CET)Videoconference call - Webex

    The 9th VASCERN Council Meeting will take place on February 19th, 2020 from 5:30 pm to 7 pm (Paris time).

  • Tue
    18
    Feb
    2020

    A preliminary announcement on the European Joint Programme on Rare Diseases (EJP RD) Joint Transnational Call (JTC) 2020 has just been released! The topic for this call is "Pre-clinical research to develop effective therapies for rare diseases"

    Research proposals must cover at least one of the following areas:

    1. Development of novel therapies in a preclinical setting (including small molecules, repurposing drugs, cell and gene advanced therapies) focusing on condition(s) with unmet medical needs
    2. Use of disease models suitable for medicinal product’s development according to EMA guidelines
    3. Development of predictive and pharmacodynamics (PD) biomarkers (with appropriate analytical methods e.g. OMICS) in a preclinical setting (e.g. in the validated model or in pre-collected human samples) for monitoring the efficiency of the therapy. The model chosen must mimic the human diseases and be transposable so that the biomarker identified in animals can be valid for humans
    4. Proof of principle studies fostering an early (pre-clinical) stage of drug development (excluding interventional clinical trials of phase 1-4).

    The maximum duration of the project is three years and the consortium submitting a proposal must involve 4-6 (up to 8, if inclusion of partners from underrepresented countries or Early Career Researchers) eligible principal investigator partners (no more than two from the same country).

    There will be a two-stage submission procedure for joint applications: pre-proposals and full proposals.

    Pre-proposal submission deadline: 18th February 2020.

    For more information on this call, please click here.

  • Tue
    18
    Feb
    2020
    Brussels, Belgium

    The EURORDIS Black Pearl Awards will take place in Brussels, Belgium on February 18th, 2020.

    This annual event recognises the outstanding achievements and exceptional work of people making a difference for the rare disease community, such as Claudia Crocione, our European Patient Advocacy Group (ePAG) Co-Chair for Hereditary hemorrhagic telangiectasia (HHT), who will be recognised with the EURORDIS Volunteer Award!

    More information on this event here

  • Mon
    17
    Feb
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on February 17th, 2020 at 5:30 pm (Paris time).

  • Tue
    11
    Feb
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on February 11th, 2020 from 10 am to 11:30 am (Paris time).

  • Wed
    05
    Feb
    2020
    6:00PM-7:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will take place on February 5th, 2020 at 6 pm (Paris time).

  • Sat
    01
    Feb
    2020
    Sat
    29
    Feb
    2020
    Worldwide

    February is Marfan Awareness Month, a time for all of us in the community to escalate our efforts to increase Marfan awareness.

    This year, the Marfan Foundation hopes you will join them in the #MarfanVictoryChallenge.

    "The idea is to spread the word about Marfan syndrome – through social media; through community events, such as educational events or fundraisers at work, school, or other community settings; or through legislative activities, such as getting a local proclamation for Marfan Awareness Month."

    More information on the Marfan Foundation website.

  • Mon
    27
    Jan
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on January 27th, 2020 from 5 pm to 6 pm (Paris time).

  • Mon
    27
    Jan
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #34 will take place on January 27th, 2020 at 8 am (Paris time).

  • Wed
    22
    Jan
    2020
    Sat
    25
    Jan
    2020
    Torino, Italy

    The 23rd Conference on Immune Pathologies and Rare Diseases, organised by C.M.I.D. (Centro di Ricerche di Immunopatologia e Documentazione su Malattie Rare) will take place from January 22-25th, 2020 in Torino Italy.

    Pernille Henriksen, ePAG co-Chair for the Pediatric and Primary Lymphedema (PPL-WG), and Elena Matta (ePAG patient advocate for PPL) will be in attendance at this event where they will be representing patients with primary lymphedema. Pernille will be speaking at a session on night time compression and workshops on primary lymphedema for patients and professionals will take place at this event.

    See the preliminary programme here

  • Mon
    20
    Jan
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on January 20th, 2020 from 5:30 pm to 6:30 pm (Paris time).

  • Wed
    15
    Jan
    2020
    Sat
    18
    Jan
    2020
    Paris, France

    The European Days of the French Society of Cardiology will be held at the Palais des Congrès in Paris from January 15-18th, 2020.

    Both Professor Guillaume Jondeau (VASCERN coordinator) and Professor Julie De Backer (Heritable Thoracic Aortic Diseases (HTAD) Working Group Chair) will be speaking at this event about aortic risk in Marfan Syndrome, monitoring of aortic dilatation in pregnant women with cardiovascular diseases, risk of aortic dissection during pregnancy and more! Assomarfans will also have an information booth at this event to raise awareness for Marfan disease.

    For all information on this event, including the programme, click here

  • Wed
    15
    Jan
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on January 15th, 2020 from 3:45 pm to 5 pm (Paris time).

  • Tue
    14
    Jan
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will take place on January 14th, 2020 from 10 am to 11:30 am (Paris time).

  • Wed
    08
    Jan
    2020
    6:00PM-7:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will take place on January 8th, 2020 from 6 pm to 7 pm (Paris time).

  • Wed
    18
    Dec
    2019
    15:45PM-17:00PM (CET)Videoconference call - Webex

    The VASCA Monthly meeting will take place on December 18th, 2019 from 3:45pm to 5pm (Paris time).

  • Mon
    16
    Dec
    2019
    17:30PM-18:30PM (CET)Videoconference call - Webex

    The PPL Monthly meeting will take place on December 16th, 2019 from 5:30pm to 6:30pm (Paris time).

  • Mon
    16
    Dec
    2019
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT WG monthly meeting #33 will take place on December 16th, 2019 at 8 am (Paris time).

  • Tue
    10
    Dec
    2019
    10:00 amZoom

    The Monthly ePAG Meeting will take place on December 10th from 10am to 11:30am (CET time zone).

  • Tue
    10
    Dec
    2019
    10:00AM-11:30AM (CET)Videoconference call - Webex

    The Meeting of the Knowledge Generation WG will take place on Tuesday December 10th, 2019. Natasha Barr will represent VASCERN at this meeting.

  • Mon
    09
    Dec
    2019
    1:00 pmwebex

    The VASCA Lymphangiography task force meeting will take place on December 9th at 1 pm (Paris time, UTC +1).

  • Wed
    04
    Dec
    2019
    6:00 pmwebex

    The MSA WG Monthly Meeting will take place on December 4th from 6 to 7pm (Paris time).

  • Fri
    29
    Nov
    2019
    London UK

    The course "challenges and choices in aortic valve and root surgery in younger patients" will take place at Glaziers Hall, London Bridge, London UK on November 11th, 2019.

    Dr. Yaso Emmanuel (HTAD-WG member) is one of the course organisers for this event.

    For more information, please click here

  • Wed
    27
    Nov
    2019
    10:00 amWebex

    The  webinar on the presentation of the repository of the ERNs document templates and taxonomy will take place on Wednesday 27 November 2019, 10h00-11h30 (GMT+1).

  • Tue
    26
    Nov
    2019
    Fri
    29
    Nov
    2019
    Maastricht, The Netherlands

    The EJP-RD is organising a Workshop and Hackathon: "Molecular pathways for rare disease (FAIR) data analysis" that will take place from November 26-29, 2019  at the University of Maastricht in The Netherlands.

    All information on this event and registration here

  • Mon
    25
    Nov
    2019
    5:00 pmwebex

    The HTAD WG Monthly meeting will take place on Monday, November 25th from 5 to 6 pm (Paris time).

  • Thu
    21
    Nov
    2019
    Fri
    22
    Nov
    2019
    Paris, France

    Paris Lymphology Days will take place from November 21-22nd, 2019 in Paris, France. It will be hosted by Dr. Stéphane Vignes (PPL WG Member) and will feature numerous presentations, including one  by VASCA WG Chair Prof Miikka Vikkula on the genetics of lymphedema, as well as practical workshops.

    To read the full program (in French) click here

    For more information (in French) click here

  • Wed
    20
    Nov
    2019
    3:45 pmWebex

    The VASCA Monthly meeting will take place on November 20th from 3:45pm to 5pm (Paris time).

  • Thu
    14
    Nov
    2019
    Fri
    15
    Nov
    2019
    10:00 amBrussels

    The 9th ERN Coordinators Group (ERN-CG) Meeting will take place in Brussels from the 4th of November 2019 from 10 am -5:30 pm and the 15th of November from 9am -1 pm.

    Prof Guillaume Jondeau, VASCERN coordinator, and Marine Hurard, VASCERN Project Manager, will be in attendance.

  • Wed
    13
    Nov
    2019
    Brussels, Belgium

    The Workshop of the ERN Research Working Group  with Research Infrastructures will take place in Brussels on November 13th, 2019.

    VASCERN's coordinator, Prof Guillaume Jondeau, will be in attendance at this event.

  • Tue
    12
    Nov
    2019
    10:00 amZoom

    The Monthly ePAG Meeting will take place on November 12th from 10am to 11:30am.

     

  • Thu
    07
    Nov
    2019
    Fri
    08
    Nov
    2019
    Brussels, Belgium

     

    VASCERN Days 2019 is quickly approaching! This year, our annual seminar will take place in Brussels, Belgium from Novembre 7th, starting at 8:30 am, to November 8th, finishing at 4:30pm at the Radisson Blu Royal Hotel.

    We look forward to welcoming around 100 participants to this event, including 65 HCPs representatives from 37 expert teams, 15 ePAGs from 15 Patient Organisations, 5 representatives from 4 of our newly appointed affiliated partners, and 11 stakeholders representing DG SANTE (European Commission),  Orphanet, FAVA-Multi (The French Network for Rare Vascular Diseases)EurordisEJP-RD, OpenApp, the French Ministry of Health, AP-HP Bichat Hospital and more!

    Read the full programme here

     

    The meeting will consist of several plenary sessions (including the annual board meeting) and two 4 to 5 hour long Rare Disease Working Group sessions as well as a dedicated VASCERN ePAG meeting. There will also be many opportunities for networking and sharing of ideas!

    This year we are also doing our part for the planet by going paperless! All event documents (programme, information kit etc), will be provided to members on one of our brand new VASCERN USB flash drives! The flash drives will equally contain other important VASCERN documents for our members.

    Please make sure to follow us on social media as we will be live tweeting throughout the two days with all the latest news and happenings using the hashtag #VASCERNDays2019! We encourage all our attendees to also participate!

  • Thu
    07
    Nov
    2019
    8:45 am to 4:30pmIstanbul, Turkey

    The European Joint Programme on Rare Disease Information Day & Brokerage Event will take place on November 7th from 8:45 am to 4:30pm in Istanbul, Turkey.

    See the programme here

  • Tue
    05
    Nov
    2019
    Wed
    06
    Nov
    2019
    Paris

    The RARE 2019 Meetings is the 6th edition of an event organised every two years to promote a health and research policy at the service of people with rare diseases.

     

    The RARE 2019 Meetings will be held on 5 & 6 November 2019 at the Cité des sciences et de l'industrie:

    City of Science and Industry
    30, avenue Corentin-Cariou
    75019 Paris

    Opening of the reception:

    Tuesday, November 5: 7:30 am - 6:30 pm

    Wednesday, November 6: 7:30 am - 5:30 pm

    For more information, click here.

  • Mon
    28
    Oct
    2019
    5:00 pmwebex

    The HTAD WG monthly meeting will take place from 5 to 6pm

  • Mon
    21
    Oct
    2019
    5:30 pmwebex

    The Pediatric & Primary Lymphoedema Working Group  Monthly Meeting (PPL Monthly Meeting) from 5:30 pm to 6.30 pm.

  • Fri
    18
    Oct
    2019
    2:00 pmwebex

    VASCA Lymphangiography task force

  • Wed
    16
    Oct
    2019
    3:45pm (UTC+1)webex

    VASCA-Working Group Monthly meeting from 3:45 pm to 5 pm

  • Tue
    15
    Oct
    2019
    4pm to 5:30pmwebex

    The Inter-ERN Working Group on Knowledge Generation will have their next meeting on October 15th, 2019 from 4-5:30pm.

  • Fri
    11
    Oct
    2019
    Sun
    13
    Oct
    2019
    Istanbul, Turkey

    The first Turkish lymphoedema congress will be held between 11 – 13 October 2019 in İstanbul, Turkey.

    The first two days there will be panels related with all aspects of lymphedema and the last day, workshops will be held on topics including; upper and lower extremity lymphedema, kinesiological bandaging in lymphedema, wound care and diagnostic ultrasound in lymphedema.

    The event has an international dimension with international participation.

    For more information, click here. 

  • Fri
    11
    Oct
    2019
    8:00 A.M(CET)webex

    The VASCERN HHT WG meeting will take place on Friday, October 11th at 8 am (Paris time).

  • Tue
    08
    Oct
    2019
    10:00 amZoom

    The VASCERN European Patient Advocacy Group (ePAG) Monthly meeting will take place from 10-11am.

  • Mon
    07
    Oct
    2019
    Tue
    08
    Oct
    2019
    Yarnfield, UK

    The British Lymphology Society (BLS) will hold their annual conference from October 7-8, 2019 in Yarnfield, UK. Pediatric and Primary Lymphedema (PPL) Working Group Members Prof. Vaughan Keeley and Prof. Kristiana Gordon will be speakers at this event.

    For more information on this event, click here

  • Mon
    07
    Oct
    2019
    Tue
    08
    Oct
    2019
    Tuusula, Finland

    The Nordic Society for Vascular Anomalies (NSVA) Meeting will take place from October 7th-8th, 2019 in Tuusula, Finland.

    Prof Miikka Vikkula, Chair of the Vascular Anomalies Working Group (VASCA WG) will be giving a presentation on VASCERN and the VASCA WG and other VASCA WG members will also be giving presentations at this event, including Prof. Päivi Salminen, Prof Laurence Boon, Dr. Nader Ghaffarpour and Dr Kristiina Kyrklund.

    For full programme, click here

  • Sat
    05
    Oct
    2019
    1:30 pmBrussels

    For its 20 year anniversary, the Association Belge du Syndrome de Marfan (ABSM) is hosting a gala on Saturday, the 5th of October 2019 at the Palais des Académies in collaboration with the Foundation 101 Génomes (F101G) and the endorsement of VASCERN. The gala will start at 1:30 pm.

    Professor Bart Loeys and Professor Julie de Backer will be speaking at this event respectively about:

    • the state of the art of the research initiated by the Foundation 101 Génomes: Genome-wide Epistasis for cardiovascular severity in Marfan Study
    • the long road to precision medicine for Marfan syndrome

    Our ePAG members Charissa Frank (MSA-WG) and Romain  Alderwereldt (HTAD-WG) will also be in attendance at this event.

    Prior to the gala, the scientific commitee of F101G will gather in the morning and members of our VASCERN HTAD working group will attend this meeting (Prof. Guillaume Jondeau, Prof Bart Loeys and Prof Julie de Backer).

    To read the full programme and to register for the gala click here.

  • Wed
    02
    Oct
    2019
    6:00 pmwebex

    MSA-WG Monthly Virtual Meeting will take place from 6-7 pm.

  • Mon
    30
    Sep
    2019
    Sat
    30
    Nov
    2019

    30 September - 30 November 2019

    The first call for new members to join existing 24 ERNs is open until 30 November 2019.

    To know more about it, check out our article.

     

  • Mon
    30
    Sep
    2019
    Brussels

    The conference will highlight the results of the current and previous EU Health Programmes and present the new approach in the future Multiannual Financial Framework for 2021-2027.

    For more information, click here

  • Mon
    30
    Sep
    2019
    8:00 amwebex

    HHT Working Group Monthly Meeting #30 from 8 am to 9 am (Paris time)

  • Mon
    23
    Sep
    2019
    Sun
    29
    Sep
    2019

    The European Biotech Week celebrates biotechnology, an innovative and vibrant sector launched by the discovery of the DNA molecule back in 1953. The first European Biotech Week that took place in 2013 marked the 60th anniversary of this pivotal moment in history.

    To have more information : click here

  • Mon
    23
    Sep
    2019
    Sat
    28
    Sep
    2019
    Buenos Aires, Argentina

    The International Society of Lymphology's (ISL's) 27th International Congress of Lymphology will take place from September 23-28, 2019 in Buenos Aires, Argentina.

    VASCERN members speaking at this event include Prof Miikka Vikkula and Prof Laurence Boon (VASCA-WG Chairs) and Prof Vaughan Keeley (PPL-WG member).

    To see the full programme click here

    For more information on this event, click here

     

  • Mon
    23
    Sep
    2019
    Fri
    27
    Sep
    2019
    Istituto Superiore di Sanità, Rome, Italy

    The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD).

    Professor Guillaume Jondeau and 2 members of the coordinating HCP APHP Bichat-Claude Bernard, will attend this event.

    For more informations : click here 

  • Mon
    23
    Sep
    2019
    17:00 - 18:00webex

    HTAD WG Monthly Meeting

  • Sat
    21
    Sep
    2019
    Sun
    22
    Sep
    2019
    Fort Lauderdale, Florida

    The Cure HHT Patient & Physician Conference will take place from September 21-22, 2019 at the Fort Lauderdale Marriott Pompano Beach Resort & Spa 1200 North Ocean Blvd. Pompano Beach, Florida 33062 USA.

    For more information, click here 

  • Thu
    19
    Sep
    2019
    Sun
    22
    Sep
    2019
    Drammen, Norway

    The 2019 Marfan Europe meeting will take place on 19-22 September 2019 in Drammen, Norway.

    More information here

  • Thu
    19
    Sep
    2019
    Worldwide

    September 19th is Aortic Awareness Day (AD-Day): a day dedicated to raising awareness for aortic diseases!  Aortic Disease Awareness events are planned and hosted by hospitals and organizations in many countries around the world.

    Within VASCERN, aortic diseases are covered by the Heritable Thoracic Aortic Diseases (HTAD) working group, which also includes diseases such as Marfan syndrome. Increasing awareness of these rare disorders is therefore essential in order to properly identify and diagnose these patients and provide them with the proper management and treatment plans.

    Members of VASCERN will be present at an event organised by Dr. Alessandro Pini, Dr. Roberto Chiesa and Dr. Germano Melissano at San Raffaele Hospital, in Milan, Italy. The video featuring our coordinator (and HTAD-WG Co-Chair), Prof. Guillaume Jondeau and Lise Murphy (ePAG Co-chair for HTAD) entitled how VASCERN: how can it help you? will be viewed along with a video intitled The role of patients in the ERNs. Paolo Federici, ePAG advocate for Hereditary Hemorrhagic Telangiectasia (HHT), will also give a presentation entitled EPAG: patients’ point of view. Many other interesting presentations are expected all day long. Take a look at the program here

    To register for this event, click here

    To learn more about the other events organised around the world, refer to the list of events.

    You can also follow all the latest news on AD Awareness Day 2019 at the Facebook page of Aortic Disease Awareness Day.

  • Wed
    18
    Sep
    2019
    15:45- 17:00webex

    VASCA Working group monthly meeting

    Webex from 3:45 pm to 5 pm

  • Tue
    17
    Sep
    2019
    Thu
    19
    Sep
    2019
    Gdansk, Poland

    The EJP RD General Assembly will take place from September 17-19, 2019 in Gdansk, Poland.

    Professor Guillaume Jondeau will attend this meeting to represent VASCERN.

  • Tue
    17
    Sep
    2019
    London, UK

    Genetic Alliance UK will hold a ERN UK conference on September 17th, 2019 in London, UK.

    VASCERN members Prof. Claire Shovlin (HHT-WG Chair; Hammersmith Hospital, Imperial College Healthcare) and Dr. Leema Robert (MSA-WG Chair; Guy’s Hospital), who represent two of our 4 British Healthcare Providers (HCPs), will be in attendance. The other two HCPs are represented by Prof. Vaughan Keeley (PPL-WG member; Derby Teaching Hospitals NHSF Trust) and Prof. Sahar Mansour (PPL-WG Co-Chair;  St George’s University Hospitals).

  • Thu
    12
    Sep
    2019
    Fri
    13
    Sep
    2019
    London

    The Pediatric and Primary Lymphedema WG (PPL WG) face-to-face meeting will take place on September 12-13th, 2019 at St Georges Hospital in London.

    It will be led by PPL-WG Chair, Dr. Robert Damstra, and PPL-WG Co-chair, Prof Sahar Mansour. The first day will include presentations by ePAG Co-Chair and Deputy Co-Chair for PPL, Pernille Henriksen and Manuela Marques, as well as discussions on the various work packages that the group have underway. The second day will focus on patient case discussions amongst the healthcare professionals of the group.

    Members of PPL-WG will equally attend a dinner on the evening of September 12.

  • Thu
    12
    Sep
    2019
    10:00 amwebex

    The 2nd  WEBINAR on the review of the 18th monitoring indicators.

  • Tue
    10
    Sep
    2019
    10:00- 11:00Zoom

    VASCERN Monthly ePAG monthly meeting

  • Tue
    10
    Sep
    2019
    2:00 pmwebex

    VASCERN HTAD clinical outcome measures

  • Tue
    03
    Sep
    2019
  • Sat
    31
    Aug
    2019
    Wed
    04
    Sep
    2019
    Paris, France

    The 2019 European Society of Cardiology (ESC) Congress will take place from the 31 August - 04 September 2019, in Paris, France.

    This events brings the world of cardiology together :

    • 32,000 healthcare professionals
    • From 150 countries
    • 4,500 abstracts presented
    • 500 experts sessions
    • 400 cardiology topics
    • 200 exhibiting companies
    • 5 days of scientific sessions

    VASCERN members, both from the HTAD and MSA working groups will be in attendance at this event.

    Many VASCERN members will also be giving presentations, including HTAD-WG Chair Prof Julie De Backer, HTAD-WG Co-Chair Prof. Guillaume Jondeau and MSA-WG Co-Chair Dr. Michael Frank. The presentations will be available on the ESC website with the creation of an ESC account (which is free).

    To sign-up for an ESC account and access the presentations click here. You can then search by topic or by speaker for all the presentations!

    More informations : click here 

  • Fri
    30
    Aug
    2019
  • Mon
    26
    Aug
    2019
  • Sun
    25
    Aug
    2019
    Tue
    27
    Aug
    2019
    Krakow, Poland

    Registration free until 01.08.2019

  • Mon
    19
    Aug
    2019
  • Wed
    07
    Aug
    2019
  • Tue
    06
    Aug
    2019
    Philadelphia
    The Penn Medicine Orphan Disease Center (ODC) will host the 6th Annual Million Dollar Bike Ride to raise money for rare disease research. Every donation made to Team LGDA / LMI will be matched by Penn Medicine ODC up to $30,000 and will be used to fund research into these rare diseases. Highline Park - 31st & Chestnut Philadelphia. PA 13/34/72 Mile Options

    For more informations click here or here.

  • Fri
    26
    Jul
    2019
  • Thu
    18
    Jul
    2019
  • Wed
    17
    Jul
    2019
  • Tue
    16
    Jul
    2019
  • Tue
    16
    Jul
    2019
    17.00-18.00WEBEX
  • Wed
    10
    Jul
    2019
    Fri
    12
    Jul
    2019
    Warth (Canton Thurgau), Switzerland

    The 7th Rare Diseases Summer School will take place in the Kartause Ittingen, Warth (Canton Thurgau), Switzerland, from July 10th to July 12th 2019.  This summer school (aimed mainly for clinicians, physician-scientists, postdocs, and PhD students) is organised by radiz - Rare Disease Initiative Zürich of the University of Zurich.

    A wide variety of subjects in the arena of rare diseases will be covered. There will be lectures given by national and international rare disease experts, workshops and poster presentations by participants. Subjects include drug development, model organisms, how to choose clinical endpoints, clinical trials, regulatory aspects, patient registries, patient initiated research, ethical considerations, as well as what rare diseases may tell us about common diseases.

    Up to 30 participants will be admitted, so space is limited. Participants are expected to bring a poster about their work or research interests related to rare diseases.

    Find the full programme here.

    For all further information, including the application procedure, click here.

    Application deadline is April 2nd 2019.

  • Thu
    04
    Jul
    2019
    1:00 pm

    When is it? Thursday, 4th July, 2PM CET

    Where is it? Join in from your laptop/desktop

    Who’s doing it? Presented by Con Hennessy, CEO, OpenApp

    Why should I be there? To get a better understanding of what an ERN population registry might look like.

    What’s it all about? An introduction to a JRC compatible ERN registry, how to collect data from multiple data sources, and how to engage patients and clinicians/HCPs. Full details below.

    To register and have more information, click here 

  • Wed
    03
    Jul
    2019
  • Mon
    01
    Jul
    2019
    London

    The MSA-WG face-to-face meeting will take place on July 1, 2019 in London, UK. It will be hosted by Dr. Leema Robert, Chair of the MSA-WG.

  • Thu
    27
    Jun
    2019
    5:30 am

    Here is the agenda:

    1.- Update on the Taxonomy study
    2.- Update on the actions included in Health Programme ( Clinical guidelines, short stays of professionals)
    3.- State of play on training and education: new action 2020

  • Wed
    26
    Jun
    2019
    from 11am to 5pmLeiden

    One representative per ERN will participate in the focus group meeting of WP17 of EJP-RD. The meeting will take place on 26 June in Leiden

    The objective of this focus group meeting will be to develop the ERN research training program based on the EJP-RD ERN survey results

    The meeting participants will discuss details for the two main schemes – training workshops/seminars and fellow exchanges - that the ERN research training program will be made of. Topics to be discussed include topic prioritisation, participants/fellow selection and assessment.

  • Tue
    25
    Jun
    2019
  • Mon
    24
    Jun
    2019
    Brussels

    The 8th meeting of the European Reference Networks Coordinators Group (ERN-CG) will take place in Brussels Belgium on the 24th of  June 2019.

    Both VASCERN's coordinator, Prof. Guillaume Jondeau, and Project Manager, Marine Hurard, will be in attendance.

  • Mon
    24
    Jun
    2019
  • Wed
    19
    Jun
    2019
  • Wed
    19
    Jun
    2019
  • Mon
    17
    Jun
    2019
  • Mon
    17
    Jun
    2019
  • Sat
    15
    Jun
    2019
    Tue
    18
    Jun
    2019
    Gothenburg, Sweden

    The European Human Genetics Conference hosted by The European Society of Human Genetics (ESHG) will take place from June 15-18, 2019 in Gothenburg, Sweden.

    Prof Bart Loeys, member of the HTAD-WG and MSA-WG, is a confirmed speaker at this event.

    To see the list of speakers : click here 

    For the programme of the event : click here 

  • Thu
    13
    Jun
    2019
    Sat
    15
    Jun
    2019
    Chicago, USA

    The 9th International Conference of the International Lymphoedema Framework (ILF) will take place from June 13-15th, 2019 in Chicago, USA.

    VASCERN PPL-WG member, Dr Kristiana Gordon, is already a confirmed to speak at this event.

    For more information, click here

  • Wed
    12
    Jun
    2019
    Sun
    16
    Jun
    2019
    PUERTO RICO

     Registration is now open for the 13th Annual International Scientific Conference!

     This June 12 - 16, in San Juan, Puerto Rico for invited speakers, cross-disciplinary sessions, abstract poster viewings, and more! Early Bird pricing is now live through April 30. Register here

    This biennial meeting is a must-attend for both established and early-stage researchers, clinicians experienced in treating HHT, those entering the field, and patients interested in learning more on the medical side.

  • Tue
    11
    Jun
    2019
    10.00-11.00Videoconference calll
  • Fri
    07
    Jun
    2019
    Paris, France

    The French network on rare multisystemic vascular diseases (FAVA-Multi) will hold their annual meeting on June 7th, 2019 in Paris, France.

    Marine Hurard, VASCERN Project Manager, will give an update on the European Reference Networks (and VASCERN in particular) and Prof. Guillaume Jondeau, VASCERN coordinator, will give an update on the Clinical Patient Management System (CPMS).

    The VASCERN coordination team as well as other French VASCERN HCP and ePAG representatives will also be in attendance at this event.

    To consult the agenda of this event (in French), click here!

  • Wed
    05
    Jun
    2019
  • Mon
    03
    Jun
    2019
  • Wed
    29
    May
    2019
    18.00-19.00WEBEX
  • Mon
    27
    May
    2019
    Tue
    28
    May
    2019
    Brussels, Belgium

    VASCERN's  Vascular Anomalies Working Group (VASCA-WG) will hold a face-to-face meeting from May 27-28th, 2019 in Brussels, Belgium.

    This meeting is organized in Brussels ( Cliniques universitaires Saint Luc.) and hosted by Miikka Vikkula ( Chair of VASCA working-group).

  • Mon
    27
    May
    2019
  • Fri
    24
    May
    2019
    11.00-12.30Videoconference call
  • Thu
    23
    May
    2019
  • Wed
    22
    May
    2019
  • Mon
    20
    May
    2019
  • Mon
    20
    May
    2019
  • Fri
    17
    May
    2019
    Sat
    18
    May
    2019
    Bucarest, Romania

    The next full EURORDIS Membership Meeting (EMM) will take place on 17 - 18 May 2019 in Bucharest. Details on how to register will be made available on this page shortly.

    EURORDIS is offering patient fellowships for up to 40 patient advocates to attend the EURORDIS Membership Meeting 2019 Bucharest.

    These fellowships aim to empower patient advocates by offering a platform for networking opportunities, access to information and sharing experiences. The programme covers:

    • Registration (fee waiver)
    • Travel (return trip economy fare flight or train)
    • Accommodation

    The total of the travel and hotel expenses reimbursed by EURORDIS cannot exceed 400€ per fellow.

    To apply for a fellowship

    Patient representatives wishing to benefit from this fellowship programme are invited to fill out and return the Patient Fellowship Programme Application Form.

    Deadline: 28 February 2019

    Selection of fellowship beneficiaries

    Fellows will be selected based on their advocacy skills and objectives, by an ad-hoc committee and notified by 15 March 2019.

    The selection criteria are defined in the Patient fellowship Evaluation Scale.

    For more information, please contact: anja.helm@eurordis.org

    For more informations about this event, click here

  • Thu
    16
    May
    2019
    Fri
    17
    May
    2019
    Hospital Saint-Louis ( Paris)

    The Hospital Managers’ meeting will take place on 16 - 17 May 2019 in Hospital Saint-Louis, Paris, France. Professor Guillaume Jondeau, ERN Coordinator, will attend this meeting.

    Here is the final agenda :

    Thursday, 16 May 2019
    13:00 Welcome and opening
    13:15 – 13:45 Introduction: What benefits can a hospital managers expect from ERNs?
    13:45 – 14:45 1st Plenary session: Funding schemes and diagnostic related groups (DRGs) systems: feasibility
    in low prevalence conditions
    14:45 – 15:45 2nd Plenary session : The hospital of the future
    15:45 – 16:15 Pause
    16:15 - 18:30: Workshops: sharing best practices to help ERN
    17:30-18:30 3rd Plenary session: Presentation of the workshop + discussion
    19:00 End of the day: visit of the “Musée des Moulages” and networking dinner at the Musée des moulages

    Friday, 17 May 2019
    09:00 – 09:30 Welcome and opening
    10:00 – 12:30 4th Plenary session: ‘The ERNs environment and actors: Dialogue with the ERN managers’
    12:30 – 14:00 Lunch
    14:00 – 16:00 : 5th Plenary session: ‘Lessons taken and next steps’
    16:00 End of the day

  • Wed
    15
    May
    2019
  • Tue
    14
    May
    2019
    Amsterdam, The Netherlands

    VASCERN's Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) will have a face-to-face meeting in Amsterdam, The Netherlands on May, 14th, 2019.

  • Tue
    14
    May
    2019
  • Tue
    14
    May
    2019
    10.00-12.00

    Marine Hurard, Project Manger will represent VASCERN at this online meeting.

  • Wed
    08
    May
    2019
    Sat
    11
    May
    2019
    Toronto, Canada

    The RE(ACT) CONGRESS, the International Congress on Research of Rare and Orphan Diseases, will take place in Toronto, Canada from May 8-11, 2019.

    All information can be found here

  • Thu
    02
    May
    2019
    Fri
    03
    May
    2019
    Rotterdam, the Netherlands

    The International Consortium for Health Outcomes Measurement (ICHOM) Conference 2019 will take place from May 2-3rd, 2019 in Rotterdam, The Netherlands.

    The conference will feature keynotes and discussion panels, as well as three breakout tracks (Clinical Care, Data and Innovation, and Strategy), comprising of three sessions each.

    For more information: click here 

  • Mon
    29
    Apr
    2019
    17.00-18.00Videoconference call - Webex
  • Sat
    27
    Apr
    2019
    Tue
    30
    Apr
    2019
     Antwerp, Belgium

    The fourth cardiogenetics training course supported by the European Society of Human Genetics will take place from Saturday April 27th to Tuesday April 30th 2019.

    The course venue alternates between Manchester and Antwerp and this year the course is organized again in Antwerp (course organizers: Prof Bill Newman, Manchester Centre for Genomic Medicine; Prof Bart Loeys, Clinical Genetics, University of Antwerp; prof Johan Saenen, cardiology, University of Antwerp)

    The course is mainly intended for young trainees in genetics and cardiology and consists of lectures, interactive and case-based teaching covering clinical and molecular aspects of cardiogenetic disorders.

    Prof. Bart Loeys, member of  the VASCERN HTAD-WG will give several presentations at this event, including one on aortopathies.

    For the course program, all other practical information and to register for the course please visit the training course website: http://ngs.uantwerpen.be/cargen2019/

  • Thu
    18
    Apr
    2019
    08.00-9.00 (Paris time) WEBEX
  • Wed
    17
    Apr
    2019
  • Tue
    16
    Apr
    2019
  • Mon
    15
    Apr
    2019
  • Wed
    10
    Apr
    2019
    Sun
    12
    May
    2019
    Gaylord National Harbor Hotel, Oxon Hill, Maryland USA

    The World Orphan Drug Congress USA focuses on the most pressing challenges and opportunities to bring rare disease therapies to patients faster.
    Bringing together a global gathering of 1,200 leaders in orphan drugs from 50 countries, the World Orphan Drug Congress USA will feature over 135 presentations covering all aspects of orphan drug development and rare disease research.

    For more information about this event, click here

  • Tue
    09
    Apr
    2019
  • Wed
    03
    Apr
    2019
  • Tue
    02
    Apr
    2019
    9:30AM-17:00PM (CET)Brussels, Belgium

    The Fifth meeting of the European Reference Networks IT Advisory Group will take place on April 2nd, 2019 in Brussels, Belgium. Prof. Guillaume Jondeau and Ibrahim Donmez will be present at this event.

  • Fri
    29
    Mar
    2019
  • Mon
    25
    Mar
    2019
    Brussels, Belgium

    The 7th ERN Coordinators Group Meeting will take place in Brussels, Belgium on March 25th, 2019. VASCERN Coordinator, Professor Guillaume Jondeau and VASCERN Project manager, Marine Hurard, will be in attendance at this event.

  • Mon
    25
    Mar
    2019
    17.00-18.00Videoconference call - Webex
  • Wed
    20
    Mar
    2019
  • Mon
    18
    Mar
    2019
    17.30-18.30Videoconference call - Webex
  • Fri
    15
    Mar
    2019
    12:30PM-13:30PM (CET)Videoconference call - Webex

    The ERN Research WG will their monthly videoconference meeting on March 15th, 2019.

    Prof. Miikka Vikkula, chair of the VASCA WG  or Prof. Claire Shovlin, chair of the HHT WG, will represent VASCERN in this interERN group.

  • Thu
    14
    Mar
    2019

    North American Vascular Biology Organization (NAVBO) is highlighting HHT research in its webinar series with Stryder Meadows, Ph.D., Assistant Professor, Stepping Stone Foundation Early Career Professor in the Department of Cell and Molecular Biology at Tulane University presenting “Angiopoietin-2 inhibition rescues arteriovenous malformation in a SMAD4 HHT mouse model”.

    Dr. Meadows’ presentation will be related to 2 papers:

    1. Vascular Deficiency of Smad4 Causes Arteriovenous Malformations: a Mouse Model of Hereditary Hemorrhagic Telangiectasia. Angiogenesis, 2018 – https://www.ncbi.nlm.nih.gov/pubmed/29460088
    2. Angiopoietin-2 Inhibition Rescues Arteriovenous Malformation in a Smad4 Hereditary Hemorrhagic Telangiectasia Mouse Model. Circulation, accepted Jan 11, 2019

    For more informations, click here

  • Tue
    12
    Mar
    2019
    17.00-18.00Webex meeting

    VASCERN eHealth WG monthly virtual meeting
    The 1st Tuesday of every month, from Tuesday, October 3, 2017, to no end date

  • Mon
    11
    Mar
    2019
    Fri
    15
    Mar
    2019
    Paris, France

    The next face-to-face training of the EURORDIS Winter School will take place 11-15 March 2019 at the Imagine Institute in Paris, France.

    For more information, click here

  • Fri
    08
    Mar
    2019
    London, UK

    VASCERN's Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) will have a face-to-face meeting in London, UK on March 8th, 2019.

    This meeting is organized in London and hosted by Claire Shovlin ( Chair of HHT working-group meeting ) in Hammersmith Hospital, Imperial College Healthcare NHS Trust.

  • Tue
    05
    Mar
    2019
    Brussels, Belgium

    Marine Hurard will be representing VASCERN for this meeting as VASCERN Project Manager.

  • Mon
    04
    Mar
    2019
    Tue
    05
    Mar
    2019
    Vienna, Austria

    The 2nd International Congress on Advanced Treatments in Rare Diseases (RARE2019) will be held in Vienna, Austria from March 4-5th, 2019. This congress will address the challenges of Rare Diseases Treatments as well as the new therapies in development.

    To see the prelimanary program click here

    For all further information click here

  • Thu
    28
    Feb
    2019

    Rare Disease Day 2019 will take place on February 28th, 2019!

    The theme for this year's event will be Bridging health and social care. Read all about the importance of this theme to the rare disease community here

    Rare Disease Day takes place on the last day of February each year and aims to raise awareness for rare diseases amongst the general public, healthcare professionals and decision-makers in order to address the needs of those living with rare diseases.

    The VASCERN Coordination team will attend an event in Paris organised by The French Reference Networks on Rare Diseases along with the French network for rare vascular diseases (FAVA-Multi)

  • Mon
    25
    Feb
    2019
    Brussels, Belgium

    Romain Alderweireldt (VASCERN Ethical and Legal WG Chair and member of  Heritable Thoracic Aortic Diseases working-group) will be representing VASCERN as Ethics WG Chair.

     

     

  • Mon
    25
    Feb
    2019
    17h-18hVideoconference call - Webex
  • Thu
    21
    Feb
    2019
    Fri
    22
    Feb
    2019
    Leuven, Belgium

    The Pediatric and Primary lymphedema Working Group (PPL-WG) will have its face-to-face meeting in Leuven, Belgium from February 21-22nd, 2018.

    This two-day meeting will be organised and hosted by Dr. Sarah Thomis, HCP Representative from the University Hospitals Leuven.

    It will be the PPL-WG's second face-to-face meeting, after VASCERN Days 2018, for this second year of activity.

    For a reminder, the other 4 Rare Disease Working Groups (HHT, HTAD, MSA and VASCA) all held their individual face-to-face meetings in May of this year.

  • Thu
    21
    Feb
    2019
    United Nations Headquarters, New York

    The Rare Disease Day Policy Event at the United Nations will take place on February 21, 2019 at the United Nations headquarters in New York.

    The event aims to present a number of activities carried out through 2017 and 2018 within the human rights, health and sustainable development agendas of the United Nations system as well as present and discuss a call towards a General Assembly Resolution on rare diseases. It will take the form of an all-day conference bringing together around 100 participants – from the international NGO community, UN agencies and national governments, academic and research institutions as well as the private sector – interested in collaborating towards the advancement of rare diseases as a global public health priority.

    For more information on this event, click here

  • Wed
    20
    Feb
    2019
    15.30-16.30Videoconference call - Webex
  • Wed
    20
    Feb
    2019
    5:30 pmVideoconference call - Webex
  • Mon
    18
    Feb
    2019
    Brussels, Belgium

    The ERN WG on Knowledge Generation/Working subgroup on Training and Education will hold a face-to-face workshop on February 18th, 2019, in Brussels, Belgium. VASCERN will be represented at this event by Raffaella Gaetano (Centro Malattie Rare Cardilogiche – Marfan Clinic Azienda Socio Sanitaria Territoriale Fatebenefratelli – Sacco, Milan, Italy).

  • Fri
    15
    Feb
    2019
    12.30-13.30Videoconference call - Webex

    The ERN Research WG will have a videoconference meeting on February 15th, 2019.

    Prof. Miikka Vikkula, chair of the VASCA WG  or Prof. Claire Shovlin, chair of the HHT WG  will represent VASCERN in this interERN group.

  • Fri
    15
    Feb
    2019
    12:30PM-13:30PM (CET)Videoconference call - Webex
  • Thu
    14
    Feb
    2019

    A preliminary announcement on the first Joint Call for Proposals of the European Joint Programme on Rare Diseases (EJP RD): "Transnational research projects to accelerate diagnosis and/or explore disease progression and mechanisms of rare diseases” has been released!

    The official call is scheduled to open on December 14, 2018, with the indicative deadline for submitting the pre-proposals being foreseen for February 14, 2019

    To read all about the upcoming call click here

    The ERA-Net E-Rare has successfully implemented ten Joint Transnational Calls for rare disease research projects since 2006. This effort is now continued in the frame of the European Joint Programme on Rare Diseases (EJP RD) that has been established to further help in coordinating the research efforts of European, Associated and non-European countries in the field of rare diseases and implement the objectives of the International Rare Disease Research Consortium (IRDiRC).

  • Wed
    13
    Feb
    2019
    Thu
    14
    Feb
    2019

    Exctract from the presentation of the sympoisum :

    EURORDIS-Rare Diseases Europe is organising the 3rd Multi-Stakeholder Symposium in February 2019 to build on the outcomes of the previous multi-stakeholder Symposia held in 2016 and 2017.
    We will use the collaborative multi-stakeholder approach in the position paper ‘Breaking the Access Deadlock to Leave No-one Behind’ written in January 2018 to develop and garner broad endorsement for a ‘roadmap’ document detailing a joint vision, offering solutions and stating commitments by all players in the rare disease community aimed at accelerating the development of effective therapies and guaranteeing timely and universal access to them, thereby progressively reducing existing gaps and inequalities.
    The timing of this initiative is of the upmost importance as the European Parliament elections will take place in May 2019 and the related changes in the European institutions, in particular at the European Commission, will subsequently take place. The ongoing discussion around the establishment of the Multiannual Financial Framework for the period 2021 – 2027 provides additional opportunities.
    Thus, it is essential for the rare disease community to have a clear and shared ‘roadmap’ that both highlights the critical need for a European vision and offers practical solutions that are implementable by the current and future European parliamentarians by 2025.

    For more information on this symposium : click here

    To see the full programme : click here 

  • Tue
    12
    Feb
    2019
    6:30 pmBrussels, Belgium

    The 8th edition of the EURORDIS Black Pearl Awards will take place on February 12th, 2019 at Le Plaza Hotel Brussels.

    The EURORDIS Black Pearl Awards is an annual awards ceremony which takes place in Brussels in February to launch the month of Rare Disease Day. Since 2012, EURORDIS-Rare Diseases Europe has organised this event to recognise the major achievements and outstanding commitment of patient advocates, patient organisations, policy makers, scientists, companies and media who strive to make a difference for the rare disease community.

    Programme:

    18.30 – 20.45 Welcome Address & Seated Dinner

    20.45 – 22.30 Awards Ceremony

    22.30 – 23.00 After dinner networking

    Prof. Guillaume Jondeau, coordinator of VASCERN, will attend this event as a member of the Black Pearl Committee.

    For more information : click here 

  • Wed
    06
    Feb
    2019
    18.00-19.00Videoconference call - Webex
  • Fri
    01
    Feb
    2019
    8.00-09.00Videoconference call - Webex
  • Thu
    31
    Jan
    2019
    Sun
    03
    Feb
    2019
    ROMA
  • Wed
    30
    Jan
    2019
    Madrid, Spain

    The FEDER (The Spanish Rare Diseases Organisation) meeting on European Reference Networks entitled "ERNs: an integral challenge", will take place on Wednesday January 30th, 2019 in Madrid, Spain. Two VASCERN ePAG members will be speakers at this event: Ms. Elena de Moya (for HTAD) and Dr. Luisa Botella (for HHT).

    Ines Hernando, ERN and Healthcare Director from Eurordis will also be in attendance.

    To learn more about this event, click here

    To read the full program (in Spanish) click here

  • Mon
    28
    Jan
    2019
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    28
    Jan
    2019
    8:00AM-9:00AM (CET)Videoconference call - Webex
  • Thu
    24
    Jan
    2019
    Sat
    26
    Jan
    2019
    Turin, Italy

    The 22nd Congress on Immune Pathology and Orphan Diseases will take place in Turin, Italy from January 24-26, 2019. Professor Guillaume Jondeau, VASCERN Coordinator, will give a presentation of VASCERN at this event.

    To read the full program (in Italian) click here

     

  • Tue
    22
    Jan
    2019
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    21
    Jan
    2019
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Wed
    16
    Jan
    2019
    16:00PM-17:00PM (CET)Videoconference call - Webex
  • Fri
    11
    Jan
    2019
    12:30PM-13:30PM (CET)Videoconference call - Webex
  • Wed
    09
    Jan
    2019
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Wed
    19
    Dec
    2018
    16:00PM-17:00PM (CET)Videoconference call - Webex
  • Mon
    17
    Dec
    2018
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Fri
    14
    Dec
    2018
    14:00PM-15:00PM (CET)Videoconference call

    The H2020-PCN-Santé with the ANR (French Research Agency) will organise a Webinar on December 14, 2018 at 2PM on the different ERA-NET cofund actions for Health and their upcomong calls.

    Webinar will be in French.

    For more information, click here

    To register (limited space available) click here

     

  • Fri
    14
    Dec
    2018
    8:00AM-9:00AM (CET)Videoconference call - Webex
  • Wed
    12
    Dec
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    11
    Dec
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Tue
    11
    Dec
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    10
    Dec
    2018
    10:00AM-11:00AM (CET)Videoconference call

    The H2020-PCN-Santé is organizing a webinar on December 10, 2018 (at 10 AM) to provide information on the European Joint Programme on Rare Diseases (EJP-RD) and its future calls for projects that will begin in 2019.

    The webinar will be in French.

    To register (participant number is limited) click here

    For more information, click here

  • Tue
    04
    Dec
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Wed
    28
    Nov
    2018
    8:00AM-9:00AM (CET)Videoconference call - Webex
  • Mon
    26
    Nov
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Thu
    22
    Nov
    2018

    Read our article about this new EU Funding here 

    Call text available here

     

  • Wed
    21
    Nov
    2018
    Thu
    22
    Nov
    2018
    Brussels, Belgium

    The 4th Conference of the European Reference Networks (ERNs) entitled "ERNs in action" will take place in Brussels, Belgium from November 21-22, 2018. The objectives of this year's conference will be to:

    • Mark that ERNs are entering the next stage of their lifecycle: the deployment phase.
    • Present the main clinical and organisational outcomes and success stories of the networks and consider the lessons learned.
    • Identify the main challenges, potential improvements and opportunities for the functioning and management of the networks and the way forward for the future of the ERN system

    VASCERN members who will be at this event include: our Coordinator, Prof. Guillaume Jondeau (who will Co-lead parallel session 6), Prof. Leo Schultze Kool (VASCERN Registry WG Chair and VASCERN VASCA-WG Co-Chair), Prof. Claire Shovlin (VASCERN HHT-WG Chair), Prof. Julie De Backer (VASCERN HTAD-WG Chair), Dr Leema Robert (VASCERN MSA-WG Chair), Prof. Robert Damstra (VASCERN PPL-WG Chair, parallel session 6 speaker), Prof. Miikka Vikkula (VASCERN VASCA-WG Chair), Dr Alessandro Pini (eHealth & Training / Education WG Chair), Romain Alderweireldt (VASCERN Ethical and Legal WG Chair (interERN WG)), Juergen Grunert (VASCERN ePAG Chair) and Natascha Assies (VASCERN ePAG co-chair for PPL and parallel session 6 speaker).

    VASCERN Coordination team members Marine Hurard (Project Manager) and Natasha Barr (Project Officer) will equally be in attendance.

    Prof Guillaume Jondeau will co-lead the parallel session 6 entitled Patient's representatives and Healthcare providers partnerships where Prof Robert Damstra and Natascha Assies will present An Overview of Pediatric and Primary Lymphedema, the Pill of Knowledge (PoK) that that the PPL-WG thanks to the close cooperation between patient advocates and healthcare professionals.

    Read the full programme here

    Find all additional information related to the conference on the European Commision's event page here.

    A link to the webstreaming of the conference will also be provided on the event page so that everyone can follow along!

     

  • Tue
    20
    Nov
    2018
    14:00PM-18:30PM (CET)Brussels, Belgium

    The 6th ERN Coordinators Group (ERN-CG) Meeting will take place on November 20th, 2018 in Brussels, Belgium.

  • Mon
    19
    Nov
    2018
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Fri
    16
    Nov
    2018
    Sat
    17
    Nov
    2018
    Oslo, Norway

    The HHT Europe Annual Meeting will take place from November 16-17, 2018 in Oslo, Norway.

    This meeting will reunite the community of HHT Patient Organisations with 35 delegates from 12 EU organizations present, along with the participation of Marianne Clancy from Cure HHT (via videoconference). This includes many of VASCERN's ePAG advocates for HHT.

    The aim of the annual meeting will be to share best practices, capacity building, and to increase know how and knowledge.

     

  • Wed
    14
    Nov
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    13
    Nov
    2018
    10:00AM-11:00AM (CET)Videoconference call
  • Tue
    13
    Nov
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    06
    Nov
    2018
    Thu
    08
    Nov
    2018
    Barcelona, Spain

    Europe’s largest Orphan Drug Congress will be back for an 8th session from November 6-8, 2018 in Barcelona Spain. This congress allows the rare disease community a chance to discover the latest developments and technologies in the orphan drugs industry.

    All information and registration on the event page here

  • Fri
    26
    Oct
    2018
    Sat
    27
    Oct
    2018
    Leipzig, Germany

    The DIGGFA society (Deutschen interdisziplinären Gesellschaft für Gefäßanomalien or, in English, the German Interdisciplinary Society for Vascular Anomalies), will hold its annual meeting on October 26-27, 2018.

    Prof. Jochen Rössler (from VASCERN's VASCA-WG) will give a presentation at this event.

    Read the programme (in German) here

  • Fri
    26
    Oct
    2018
    8:30AM-18:35PMBudapest, Hungary

    The first Central-Eastern European Marfan Symposium, organised by our HCP Member, Prof. Zoltán Szabolcs, MD; and Dr Kálmán Benke, MD, PhD; Heart and Vascular Center, Semmelweis University, Budapest, will take place on October 26th, 2018 in Budapest, Hungary.

    Prof Guillaume Jondeau, VASCERN Coordinator, will present VASCERN and the HTAD-WG at this event.

    (1) European Reference Network for Vascular Diseases (VASCERN)
    Prof. Guillaume Jondeau, MD; Director, Heart Failure Unit, Cardiology Department, Claude Bichat-Claude Bernard Hospital, Paris Director, Centre de référence sur le syndrome de Marfan et apparentés

    Prof Julie De Backer, VASCERN HTAD-WG Chair, will be also in attendance and present:

    (8) Marfan cardiomyopathy
    Prof. Julie De Backer, MD; Centrum Medische Genetica, Gent

    Prof. Jolien Roos-Hesselink, from our HCP Member Erasmus MC, Rotterdam, HTAD-WG Member, will also be presenting:

    (11) Pregnancy in Marfan syndrome
    Prof. Jolien Roos-Hesselink, MD; Erasmus MC, Rotterdam

    To see theprogram, click here

    All information and registration here

  • Mon
    22
    Oct
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Thu
    11
    Oct
    2018
    Fri
    12
    Oct
    2018
    Paris, France

    VASCERN Days 2018 (2-day annual seminar) will take place on October 11-12, 2018 in Paris, France.

    This event is only open to members of VASCERN (both HCPs & ePAGs) as well as several invited guests from institutions such as the European Commission, OpenAPP, EURORDIS, and the French Ministry of Health. In total, more than 100 participants, from all across Europe, are expected!

    To read the full programme click here

    For more information on this event click here

     

     

     

  • Tue
    09
    Oct
    2018
    Wed
    10
    Oct
    2018
    Rome, Italy

    The National Center for Rare Diseases is organising a two-day course entitled Clinical Practice Guidelines for Rare Diseases : development and quality assessment. 

    The course intends to promote guideline quality standards in rare diseases and to support the European Reference Networks in the development of their capacity
    to produce and assess clinical practice guidelines.

    Further information here

     

     

     

  • Mon
    01
    Oct
    2018
    Tue
    02
    Oct
    2018
    Yarnfield, UK

    The British Lymphology Society (BLS) will hold their annual conference from October 1-2, 2018 in Yarnfield, UK.

    Confirmed speakers include PPL-WG members, Professor Vaughan Keeley and Dr Kristiana Gordon.

    For more information, click here

  • Wed
    26
    Sep
    2018
    Sat
    29
    Sep
    2018
    Ghent, Belgium

    The International Symposium of the Ehlers-Danlos Syndromes will take place in Ghent, Belgium, from the 26-29 of September 2018.

    Members of our Medium-Sized Artery Working Group (MSA-WG), including Dr. Leema Robert (Chair of MSA-WG), Prof Xavier Jeunemaitre (Co-Chair of MSA-WG) and Prof Julie De Backer, will be in attendance.

    Dr Leema Robert will present VASCERN and the new VASCERN mobile App during her presentation: Development of a multipurpose mobile app for patients with EDS.

    For more information, including the full program, click here

    To register for this event, click here

  • Tue
    25
    Sep
    2018
    14:00PM-17:00PMWeb Streaming

    The Expert Panel on Effective ways of Investing in Health will organise a Hearing on the application of the ERN model in European cross-border healthcare cooperation outside the rare diseases area (webstreamed) on Tuesday September 25th, 2018 from 14:00-17:00 CET.

    To watch the webstreaming, click here

    More information here

     

  • Mon
    24
    Sep
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    24
    Sep
    2018
    8:00AM-9:00AM (CET)Videoconference call - Webex
  • Thu
    20
    Sep
    2018
    Sat
    22
    Sep
    2018
    Stockholm, Sweden

    The International Conferences on Rare Diseases and Orphan Drugs (ICORD) will hold its 13th Annual Meeting from the 20-21 September 2018 in Stockholm, Sweden.

    "One aim of ICORD 2018 is to review needs that have been fulfilled and, in particular, to highlight important remaining unmet needs for patients with Rare Diseases in a global perspective."

    To Register for this event click here: https://icord2018.eventsmart.com/events/icord-2018/

    For more information click here: http://icord.se/upcoming-events/icord-2018-stockholm

     

  • Wed
    19
    Sep
    2018
    Worldwide

    Aortic Disease Awareness Day is an international day of events that aim to raise awareness for aortic diseases and aortic dissection!

    For more information and to find events near you, click here

  • Wed
    19
    Sep
    2018
    16:00PM-17:00PM (CET)Videoconference call - Webex
  • Mon
    17
    Sep
    2018
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Wed
    12
    Sep
    2018
    Fri
    14
    Sep
    2018
    Liège, Belgium

    The 6th edition of the International Meeting on Aortic Diseases will be held from September 12-14, 2018 in Liège, Belgium.

    "The main goal of The International Meeting on Aortic Diseases (IMAD) is to gather all cardiovascular clinicians and scientists to share their experiences on basic research, genetic aspects of aortic aneurysms, aortic dissections, aortitis, aortic graft infection and their treatment as well as on the new pathophysiological concepts in bicuspid aortic valve, TAVI indications and surgical treatment of aortic valve diseases and also, to provide information about the latest innovations in spinal cord protection."

    Speakers at this event include Prof Julie De Backer (our HTAD WG Chair and MSA WG member) and Prof Bart Loeys (member of the HTAD and MSA WGs).

    Register for this exciting event here

    For the full program and all other information click here

  • Wed
    12
    Sep
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    11
    Sep
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Mon
    10
    Sep
    2018
    Fri
    14
    Sep
    2018
    Rome, Italy

    The 6th International Summer School Rare Disease & Orphan Drug Registries, including a “Bring Your Own Data – BYOD” to Link Rare Disease Registries session, will take place from September 10-14, 2018, at the Istituto Superiore di Sanità in Rome, Italy.

    The International Summer school intends: i) to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) registries in compliance with IRDiRC and EU Recommendations, with particular attention to governance, quality, sustainability and legal issues; ii) to support cooperation among different registry stakeholders and coordination with registries that are developed within European Reference Networks (ERNs) and National Plans in the EU.
    The School will consist of plenary presentations and interactive small-group exercises, according to the Problem-Based Learning methodology.

    The first part (September 10-12, 2018) will provide participants with useful tools and methodologies to plan, establish and manage the registry activities.

    The second part (September 13-14, 2018) will be a hands-on experience (Bring Your Own Data), where the attendees work with FAIR data experts to make their data FAIR and linked to other data that has been made FAIR before.

    The School is open to health professionals, researchers, medical specialists, registry curators, database managers and representatives of patients associations involved in or intend to establish a rare disease registry, including inside European Reference Networks.

    Prof Guillaume Jondeau, VASCERN Coordinator, will represent VASCERN at the first part of this event.

    Register before May 30th, 2018 via the online registration form here

    The provisional agenda for the event can be found here

    For more information click here

     

  • Mon
    10
    Sep
    2018

    The Orphan Disease Center is offering 39 research opportunities focusing on 23 different rare diseases. This program provides a one-year grant to support research related to a rare disease represented in the 2018 Million Dollar Bike Ride.

    Of the 23 rare diseases on the list, two grants of $50,535 are available for basic science and/or clinical research on Generalized Lymphatic Anomaly (GLA; a.k.a. lymphangiomatosis) and Gorham-Stout Disease (GSD), diseases covered by our VASCA-WG. Areas of interest include, but are not limited to, genetic analysis, biomarker identification, cell line creation and characterization, and imaging.

    These two grants are made possible by Team LGDA (Lymphangiomatosis & Gorham’s Disease Alliance) and Team LMI (Lymphatic Malformation Institute).

    For more information on these two grants, or any of the others available, and how to apply, click here

    Deadline for submitting a Letter of Interest is by Monday, September 10th, 2018 by 8pm EST. 

  • Thu
    06
    Sep
    2018
    Sat
    08
    Sep
    2018
    Helsinki, Finland

    The 7th Nordic Congress of Lymphology will take place in Helsinki, Finland, from September 6-9, 2018.

    Members from both the VASCA-WG (including Chair, Prof Miikka Vikkula) and PPL-WG (including Chair Prof Robert Damstra, Dr Michael Oberlin, Prof Sinikka Suominen, and Dr Kristiana Gordon) will be giving presentations at this event!

    To register for this event click here

    For more information click here

  • Wed
    29
    Aug
    2018
    8:00AM-9:00AM (CET)Videoconference call - Webex
  • Sat
    25
    Aug
    2018
    Wed
    29
    Aug
    2018
    Munich, Germany

    The European Society of Cardiology (ESC) Congress 2018, the world's largest cardiovascular congress, will take place from August 25-29th, 2018 in Munich, Germany.

    Many VASCERN members will be attendance at this international event, including Prof Julie De Backer (Chair of HTAD-WG), Prof Guillaume Jondeau (Co-Chair of HTAD-WG), Prof Yskert von Kodolitsch (HTAD-WG) and Prof Jolien Roos-Hesselink (HTAD-WG).

    For more information and for the full programme, click here

    Early Registration Deadline: May 31, 2018.

    Register for this event here

  • Mon
    20
    Aug
    2018
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Mon
    23
    Jul
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Wed
    18
    Jul
    2018
    16:00PM-17:00PM (CET)Videoconference call - Webex
  • Mon
    16
    Jul
    2018
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Wed
    11
    Jul
    2018
    Fri
    13
    Jul
    2018
    Warth (Canton Thurgau), Switzerland

    The 6th radiz Rare Diseases Summer School will take place in the Kartause Ittingen, Warth (Canton Thurgau), Switzerland, from July 11th to July 13th 2018. It is organised by radiz, a clinical research priority program of the University of Zurich with collaborations between the Children's Hospital Zurich, the University of Zurich, and the UniversityHospital Zurich.

    Lectures by national and international rare disease experts, workshops and poster presentations by participants will all take place during this 3 day event!

    Application deadline: April 9th 2018.

    See preliminary programme here

    For more information click here

  • Wed
    11
    Jul
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Wed
    11
    Jul
    2018
    8:00AM-9:00AM (CET)Videoconference call - Webex
  • Tue
    10
    Jul
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Wed
    04
    Jul
    2018
    18:00PM-19:00PM (CET)Videoconference call - Webex

    The 5th VASCERN Council Meeting will take place on July 4th, 2018 at 6PM.

  • Mon
    02
    Jul
    2018
    Tue
    03
    Jul
    2018
    London, UK

    The International Congress on Advanced Treatments in Rare Diseases (RARE2018) will take place from July 2-3, 2018 in London, UK. This congress will address the challenges of developing rare disease treatments as well present the latest in rare disease therapies.

    Early bird registration, until March 14, 2018,  here

    For full programme, click here

    For further information click here

  • Thu
    28
    Jun
    2018
    Fri
    29
    Jun
    2018
    Rome, Italy

    The International Conference on Vascular Anomalies organized by La Società Italiana per lo Studio delle Anomalie Vascolari (SISAV) will take place from June 28-29, 2018 in Rome, Italy.

    Members of the VASCA-WG will be giving presentations at this event, including Prof Miikka Vikkula (Chair), Prof Laurence Boon, Dr May El Hachem, and Dr Andrea Diociaiuti.

    Link to the program here

  • Tue
    26
    Jun
    2018
    Brussels, Belgium

    The representatives of the Ministry of Health will meet at the ERN Board of Member States meeting.

  • Mon
    25
    Jun
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    25
    Jun
    2018
    8:45AM-17:00PMBrussels, Belgium

    The 5th meeting of the ERN Coordinators Group (ERN-CG) will take place on June 25th, 2018 in Brussels, Belgium.

    It will be preceeded by the internal coordinator's meeting.

  • Fri
    22
    Jun
    2018
    8:30AM-17:00PMEspace Grenelle, 84 rue de Grenelle, Paris 7ème

    The Annual FAVA-Multi (The French Network for Rare Vascular Diseases) Day will take place on June 22, 2018 in Paris, France. Prof Guillaume Jondeau (Coordinator of both FAVA-Multi and VASCERN) will be at this event.

    Marine Hurard, VASCERN Project Manager, will present VASCERN's actions to date.

    The program of the event, in French, can be found here

     

  • Wed
    20
    Jun
    2018
    16:00PM-17:00PM (CET)Videoconference call - Webex
  • Mon
    18
    Jun
    2018
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Sat
    16
    Jun
    2018
    Tue
    19
    Jun
    2018
    Milan, Italy

    The latest advances in human genetics will be explored at the the 51st European Human Genetics Conference in Milan, Italy from June 16-19, 2018. Participants from all over the world will be in attendance and VASCERN members, Prof Laurence Boon (VASCA WG) and Prof Miikka Vikkula (Chair of VASCA WG) will be speakers at this exciting event with presentations entitled "Etiology of vascular malformations: A question of place and timing" and "Clinical management of vascular malformations"

    Deadline to submit an abstract: Friday, March 9, 2018

    Early bird deadline: Friday, April 6, 2018

    Link to programme here

    For further information visit the event website here

  • Wed
    13
    Jun
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    12
    Jun
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Mon
    11
    Jun
    2018
    Fri
    15
    Jun
    2018
    Barcelona, Spain

    The EURORDIS summer school is taking place in Barcelona from the 11 - 15 June 2018. This year, the summer school will focus on educating patients and researchers on the regulatory process of orphan medicinal products in Europe in order to strengthen their advocacy skills. The last day to register for the English edition is November 30th, 2017 and the last day to register for the Spanish edition is December 15th, 2017.

    All information here

  • Fri
    08
    Jun
    2018
    9:00AM-1:00PM (CET)Brussels, Belgium

    The second meeting of the Scientific Committee of the 101 Genomes Marfan project (P101GM) will take place on June 8, 2018 in Brussels, Belgium.

    The P101GM is the first pilot project of The 101 Genomes Foundation, a private Foundation that was created in November 2017 by Ludivine Verboogen & Romain Alderweireldt (Chair of the VASCERN Ethics WG and ePAG representative for the Association Belge du Syndrome de Marfan) who are parents of a child with Marfan syndrome. Its aim is to improve the lives of people affected by rare diseases by supporting research and development through the creation of a bioinformatics platform containing genomic and phenotypic cross-data from a cohort of 101 patients.

  • Wed
    06
    Jun
    2018
    Sat
    09
    Jun
    2018
    Rotterdam, The Netherlands

    The 8th International Lymphoedema Framework (ILF) Conference will take place from the 6th-9th of June, 2018 in Rotterdam, the Netherlands. This conference, hosted by the ILF and the Dutch Lymphoedema Framework (NLNet) will be a great opportunity for healthcare professionals, researchers, patients, and industry to discuss the latest advances in the treatment and care of lymphoedema and to raise awareness in order to make it a priority on all national health agendas.

    There will also be a Children's Day on June 9th, where children can participate in a variety of workshops all centered around the theme ‘Children and edema: a dynamic duo’.

    Register here

    For more information, click here!

  • Wed
    06
    Jun
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex

    The VASCERN Patient Registry WG meeting #6 will take place place on June 6, 2018 at 5 pm.

  • Thu
    31
    May
    2018
    17:30 PM - 18:30 PM (CET)Videoconference call - Webex
  • Wed
    30
    May
    2018
    Fri
    01
    Jun
    2018
    Amsterdam, The Netherlands

    The 22nd ISSVA (International Society for the Study of Vascular Anomalies) International Workshop will be held in Amsterdam, Netherlands from May 29-June 1st, 2018. This biannual meeting will be co-chaired by Prof Leo Schultze Kool (co-chair of the VASCA WG and chair of the Patient Registry WG) and will be attended by specialists from expert centres all around the world.

    All of the HCP members of the VASCA WG will be represented and a large number of them will equally be speaking at the event or presenting posters. Our VASCA-WG will use this opportunity to assemble for a face-to-face meeting on Monday May 28th.

    This year, for the first time, patient organisations will be actively involved and there will be a Patient Organisations meeting that will take place on the afternoon of Tuesday May 29th, 2018.

    This biannual meeting, which is attended by a wide array of specialists including intervention radiologists, dermatologists, plastic surgeons, ENT surgeons, pediatricians, pediatric surgeons, oncologists and pathologists, presents the latest developments in this fast moving area.

    Watch the promotional video here

    Early bird registration deadline: 16 March 2018

    Discounted registration deadline: 1 May 2018

    All information and registration on the event page here

  • Tue
    29
    May
    2018
    Wed
    30
    May
    2018
    London, UK

    An RD-Action workshop, co-organised with the European Medicines Agency (EMA) and with DG Sante, will take place in London from May 29th-30th, 2018.

    This event hopes to showcase the ERNs to the EMA, to explore how ERNs can add value to clinical trials/studies, and to define some concrete steps towards a more strategic engagement with the EMA, in particular, in future.

    Prof Claire Shovlin (Chair of our HHT-WG) will represent VASCERN at this event.

    More information TBA.

  • Tue
    29
    May
    2018
    London, UK

    The VASCERN HHT-WG will have a face-to-face meeting in London, UK on May 29th, 2018. Further details on this meeting TBA.

  • Tue
    29
    May
    2018
    Brussels, Belgium

    The VASCERN HTAD-WG will hold a face-to-face meeting in Brussels, Belgium on May 29th, 2018. Further details on this meeting TBA.

  • Mon
    28
    May
    2018
    Amsterdam, The Netherlands

    Our VASCA-WG will assemble for a face-to-face meeting on Monday May 28th in Amsterdam, The Netherlands.

    This meeting will be held before the ISSVA 22nd International Workshop, that runs from May 30th-June 1st, 2018. More details here.

  • Wed
    23
    May
    2018
    London, UK

    The VASCERN MSA WG will hold a face-to-face meeting on May 23rd, 2018 in the framework of the Pan London aortopathy meeting at Guy's Hospital in
    London, UK. Further details TBA.

  • Wed
    23
    May
    2018
    13:00 - 17:20 BSTLondon, UK

    The Pan-London Aortopathy meeting with Focus on Pregnancy will take place in London on the afternoon of May 23rd, 2018. This meeting will follow the MSA-WG face-to-face meeting in the morning.

    Dr. Leema Robert and Dr. Yaso Emmanuel (Chair and member of the MSA-WG) will give a presentation entitled "Introduction to the European Reference Network (ERN) for Rare Vascular diseases" and a discussion period will allow participants to give their feedback on what topics they think should be covered by the soon to be created 'pills of knowledge' by the MSA-WG.

    Read the full programme here

     

  • Tue
    22
    May
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Wed
    16
    May
    2018
    16:00PM-17:00PMVideoconference call - Webex
  • Tue
    15
    May
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Thu
    10
    May
    2018
    Sat
    12
    May
    2018
    Vienna, Austria

    ECRD – the European Conference on Rare Diseases & Orphan Products is the largest multi-stakeholder gathering in Europe for the rare disease community covering research, development of new treatments, healthcare, social care, public health policies and support at European, national, regional and international levels.

    All information & registration available here

    Deadline to register: 27 April 2018
    Early-bird cut off date: 15 March 2018

    Programme

  • Sun
    06
    May
    2018
    Amsterdam, the Netherlands

    The Marfan Foundation’s First International Patient Symposium on Marfan Syndrome and Related Disorders will be held on May 6th, 2018 in Amsterdam, The Netherlands.

    This event will feature leading medical speakers from several countries, including the US, and will offer both education and support programs that were created to increase a patient's understanding of Marfan and related disorders, answer any questions about diagnosis and treatment, and improve the quality of life of patients with these diseases.

    Topics pertaining to adults, teens, and children with Marfan and related disorders will be covered. The program also includes a Creating Connections Luncheon where patients can spend time networking with people in their area who also have Marfan or a related disorder.

    After the main program there will be time for a meet and greet with the doctors and fellow patients from across Europe.

    To register for this event click here

    For more information on this event click here

     

  • Thu
    03
    May
    2018
    Sat
    05
    May
    2018
    Amsterdam, The Netherlands

    The 10th International Research Symposium on Marfan Syndrome (MFS) and Related Disorders (RD) will take place from the 3rd-5th of May, 2018 in Amsterdam, The Netherlands.

    This symposium brings together the world’s leading experts (including members from the VASCERN HTAD WG) to discuss the most recent and innovative research on MFS and RD. A wide variety of topics will be discussed including sessions on  "Genetic and Environmental Modifiers of MFS and RD Phenotypic Variability" to "Medical and Holistic Treatment Options for Pain in MFS".

    Early bird registration ends on February 1st, 2018! To register for this event, click here

    Find the schedule for the event here

    For further information, click here

     

  • Wed
    02
    May
    2018
    Amsterdam, The Netherlands

    The 2nd Vascular Ehlers Danlos Syndrome (vEDS)Scientific Meeting will take place May 2, 2018 in Amsterdam, the Netherlands. This meeting will bring together some of the brightest minds within the international vEDS community to discuss current needs and concerns, as well as recent advances in their research.

    Several VASCERN MSA-WG members will be present at this event including Dr. Leema Robert (Chair), Prof Xavier Jeunemaître (Co-Chair), Prof Julie De Backer and Dr. Michael Frank.

    More information here

  • Thu
    26
    Apr
    2018
    17:00PM (CET)

    The objective of this action is to support Member states in improving the gathering of information on rare diseases by the implementation of Orphacodes (rare diseases specific codification system).

    For more information click here

    Submission deadline: 26 April 2018 at 17:00 PM (CET)

  • Mon
    23
    Apr
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Sat
    21
    Apr
    2018
    Tue
    24
    Apr
    2018
    Manchester, UK

    The third cardiogenetics training course supported by the European Society of Human Genetics will take place in Manchester, UK (course organizers: Prof Bill Newman, Manchester Centre for Genomic Medicine; Prof Bart Loeys, Clinical Genetics, University of Antwerp; prof Johan Saenen, cardiology, University of Antwerp) from Saturday April 21st to Tuesday April 24th 2018.

    The course is mainly intended for young trainees in genetics and cardiology and consists of lectures, interactive and case-based teaching covering clinical and molecular aspects of cardiogenetic disorders. Speakers at this event include Prof Bart Loeys (VASCERN HTAD and MSA WG member) and Prof Xavier Jeunemaitre (VASCERN MSA-WG Co-Chair).

    For course program, all practical information and to register for the course please go via the ESHG website here

    Ten ESHG scholarschips (covering registration and accommodation) are available for young cardiologists/ clinical geneticists in training from European Countries. Preference will be given to students from countries which are disadvantaged economically. To apply for a scholarship please send after registration a motivation letter to anne.m.burns@manchester.ac.uk.

     

  • Wed
    18
    Apr
    2018

    The European Commision Call for the European Joint Programme Co-fund on Rare Diseases has been published:

    http://ec.europa.eu/research/participants/portal/desktop/en/opportunities/h2020/topics/sc1-bhc-04-2018.html

    The overall objective is to implement a European Joint Programme (EJP) Cofund for Rare Diseases which would create a research and innovation pipeline "from bench to bedside" ensuring rapid translation of research results into clinical applications and uptake in healthcare for the benefit of patients.

    The initiative should follow the policies and contribute to the objectives of the International Rare Diseases Research Consortium (IRDiRC).

  • Wed
    18
    Apr
    2018
    16:00PM-17:00PMVideoconference call - Webex
  • Wed
    18
    Apr
    2018
    17:00PM-18:00PMVideoconference call - Webex
  • Mon
    16
    Apr
    2018
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Wed
    11
    Apr
    2018
    Fri
    13
    Apr
    2018
  • Tue
    10
    Apr
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Tue
    10
    Apr
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Wed
    28
    Mar
    2018
    8:00AM-9:00AM (CET)Videoconference call - Webex
  • Mon
    26
    Mar
    2018
    Thu
    29
    Mar
    2018
    Cambridge, UK

    All information on this conference here

  • Mon
    26
    Mar
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    19
    Mar
    2018
    17:30 PM - 18:30 PM (CET)Videoconference call - Webex
  • Thu
    15
    Mar
    2018

    The European Research Area Network on Cardiovascular Diseases (ERA-CVD) has announced the Joint Transnational Call 2018 (JTC 2018) entitled “Transnational Cardiovascular Research Projects driven by Early Career Scientists” that opened on January 11th, 2018.

    This call is open to all early career scientists, which is defined as a scientist that has “been awarded his/her first doctoral degree at least 3 years and up to 10 years prior to the pre-proposal deadline of the ERA-CVD JTC 2018”, in the field of cardiovascular diseases. Funding will only be awarded to transnational projects with a minimum three research groups from three different countries (for the list of eligible countries and their corresponding funding organisations, see link below).

    This call aims to foster international collaboration and interchange between early career scientists in order to answer key questions in cardiovascular disease research with innovative and ambitious multidisciplinary research projects.

    Link to call text here

    For all other information: http://www.era-cvd.eu/294.php

    Call opens: January 11, 2018

    Deadline for submission the pre-proposals: March 15, 2018, 17:00 CET

    Deadline for submission the full-proposals: June 15, 2018, 17:00 CET

  • Wed
    14
    Mar
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    13
    Mar
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Thu
    08
    Mar
    2018
    Fri
    09
    Mar
    2018
    Milan, Itlay

    The Joint Research Centre (JRC) of The European Commission will hold its second training workshop on the European RD Registry Infrastructure (ERDRI) Tools on March 8-9th in Milan Italy. This session will deal specifically with the Pseudonymisation Tool and the Search Broker.

    VASCERN will be represented at this event by Prof Leo Schultze Kool, Chair of the Patient Registry WG, along with Dr Susan Marelli and Dr Raffaella Gaetano.

  • Thu
    08
    Mar
    2018
    18:00PM-19:00PM (CET)Videoconference call - Webex

    The VASCERN Patient Registry WG meeting #5 will take place place virtually on March 8, 2018 at 6pm.

  • Wed
    07
    Mar
    2018
    Sat
    10
    Mar
    2018
    Bologna, Italy

    The RE(ACT) CONGRESS, the International Congress on Research of Rare and Orphan Diseases, will take place in Bologna, Itlay from July 7-10, 2018.

    All information about the RE(ACT) CONGRESS & registration available here.

    For a limited time, a special registration rate for the RE(ACT) Congress 2018 is available. The special price is 250 Euros (only payable by credit card and not applicable to private companies). To benefit of the special rate, please register on the registration page and insert the promotional code “HAPPYCRAZYRATE” at the end of the form.

  • Wed
    07
    Mar
    2018
    18PM-19PM (CET)Videoconference call - Webex

    The VASCERN Council meets every 4 months, or more depending on needs. This is the 4th VASCERN Council meeting. The Council is chaired by the Coordinator and Members are the Chairs of our Working Groups.

  • Tue
    06
    Mar
    2018
    10:00AM-16:30PM (CET)Brussels, Belgium
  • Tue
    06
    Mar
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    05
    Mar
    2018
    Brussels, Belgium

    The 4th ERN Coordinators Group Meeting will take place on March 5th, 2018 in Brussels, Belgium.

  • Wed
    28
    Feb
    2018
    Worldwide

    Rare Disease Day 2018 will take place on February 28th, 2018! This yearly International event aims to to raise awareness for Rare Diseases with the general public and policy-makers and everyone is encouraged to take part!

    There will be numerous events all around the world, including a Rare Disease Day 2018 event in Paris, France organised by the French Rare Disease Networks. The "Rare Disease Village" will take place in Paris under the canopy of the Forum des Halles. Visitors will be able to participate in a wide variety of interactive activities including a central area dedicated to adaptive sports, rare disease quizzes with prizes, a photobooth and various workshops on different themes such as "Dare Diseases and Nutrition" and "Introduction to Rare Disease Research". This event aims to reach out to the general public in order to raise awareness for rare diseases.

    VASCERN will equally be in attendance at this event in order to inform the public about VASCERN and the European Reference Networks (ERNs) in general. We look forward to seeing you  there!

    Link to the event here

    For a list of events near you click here

    All information at https://www.rarediseaseday.org/

    The official 2018 Rare Disease Day video is now available (in 24 languages)! Find it here

     

  • Mon
    26
    Feb
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    26
    Feb
    2018
    17:30PM-18:30PMVideoconference call - Webex
  • Thu
    22
    Feb
    2018
    Sat
    24
    Feb
    2018
    Brussels, Belgium

    The International Symposium entitled "Revisiting Fibromuscular Dysplasia and Related Vascular Diseases" will take place in Brussels, Belgium from February 22-24, 2018.

    This exciting event will unite the top experts in Fibromuscular Dysplasia (FMD) including the meeting's Co-President, Prof Alexandre Persu, who is an expert in FMD and in charge of the Hypertension Clinic at the Université Catholique de Louvain (Cardiology Department, Cliniques Universitaires Saint-Luc, Brussels), a centre we hope to include in the upcoming expansion of the VASCERN network.

    VASCERN members Prof Bart Loeys, Prof Xavier Jeunemaitre and Prof Miikka Vikkula will also be in attendance!

    To register click here

    Full programme here

    Additional information here

  • Wed
    21
    Feb
    2018
    Brussels, Belgium

    The 26th EURORDIS Round Table of Companies Workshop, entitled "Rare disease therapies: do you get what you incentivise?" will take place on February 21st, 2018 in Brussels, Belgium.

    This workshop will bring together stakeholders interested rare diseases and orphan drug development to discuss the role of incentives in rare disease therapies development,  the shortcomings of the current system and the strategies that the rare disease community can use to fulfill important unmet medical needs.

    See the preliminary Programme here

    For more information, click here

  • Wed
    21
    Feb
    2018
    11 AM-4 PMInstitut Imagine, Paris

    The European Joint Programme on Rare Diseases is currently under elaboration. European Reference Networks are partners of this future new European programm.e for Rare Diseases research. Professor Claire Shovlin and Marine Hurard will be attending for VASCERN at this event.

  • Wed
    21
    Feb
    2018
    16:00PM-17:00PMVideoconference call - Webex
  • Wed
    21
    Feb
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    13
    Feb
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Tue
    13
    Feb
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Fri
    09
    Feb
    2018
    Paris, France

    The 3rd International Congress organized by UNSED, French National Union of Ehlers-Danlos syndromes, will take place in Paris, France on February 9th, 2018. Prof Xavier Jeunemaitre (MSA-WG Co-Chair) will be one of the speakers at this event, where he will give a presentation on the latest news in vascular EDS.

    More information here

     

  • Fri
    09
    Feb
    2018
    8:00AM-9:00AM (CET)Videoconference call - Webex
  • Thu
    08
    Feb
    2018
    Fri
    09
    Feb
    2018
    Baveno, Italy

    The Joint Research Centre of The European Commission will host a training workshop on Rare Disease Registries from February 8-9th, 2018 in Baveno, Italy.

    Prof Leo Schultze Kool (Patient Registry WG Chair) and Dr. Alessia Paglialonga will be attending for VASCERN.

  • Tue
    06
    Feb
    2018

    The launch of the 10th E-Rare-3 Call for Proposals 2018 "Transnational research projects on hypothesis-driven use of multi-omic integrated approaches for discovery of disease causes and/or functional validation in the context of rare diseases" occurred on December 7, 2018.

    This call is aimed at scientists from different countries (see link below for list of 18 countries eligible and their respective funding organisations) wishing to establish a successful international collaboration on a common research project involving a group of rare diseases or a single rare disease. Each consortium submitting a proposal must be composed of atleast 3 eligible research partners from at least 3 different countries.

    Project proposals should highlight the added-value of transnational collaboration, should focus on hypothesis-driven use of multi-omic integrated approaches and should have a strong translational research orientation. The total budget available for this call is 18.54 M€.

    Joint Pre-proposal submission deadline: February 6, 2018 at 5 p.m. CET.

    Joint full proposal deadline (if invited): June 19, 2018 at 5 p.m. CET

    For all information on the call, including the guidelines for applicants and pre-proposal submission form, click here

  • Mon
    05
    Feb
    2018
    Tue
    06
    Feb
    2018
    Paris, France

    The European Joint Programme (EJP) Cofund on Rare Diseases will have its second meeting on the 5-6 of February, 2018 in Paris, France to work on the writing of the application for this instrument that aims to support coordinated national research and innovation programmes. Professor Claire Shovlin (Chair of the HHT-WG) will be in attendance for VASCERN at this event.

     

  • Sun
    04
    Feb
    2018
    Thu
    08
    Feb
    2018
    Melbourne, Autralia

    The 18th UIP World Congress of Phlebology will take place in Melbourne, Australia from February 4-8, 2018. It is the largest international gathering of the phlebology community. Phlebology is a multi-disciplinary field studying disorders of venous origin. Three VASCERN members are keynote invited speakers at this event: Prof Miikka Vikkula (Chair of our VASCA-WG), Prof Laurence Boon (VASCA-WG) and Prof Vaughan Keeley (PPL-WG).

    To register or find more information on this event click here!

  • Mon
    29
    Jan
    2018
    8:00 AM-9:00 AM (CET)Videoconference call - Webex
  • Thu
    25
    Jan
    2018
    webex

    VASCA WG submeeting on Orphanet classification

  • Thu
    25
    Jan
    2018
    16:00PM-18:00PM (CET)Videoconference call - Webex

    The VASCA WG will have their second meeting on the Orphanet classification of Rare Vascular Anomalies.

  • Mon
    22
    Jan
    2018
    Luxembourg

    The Consumers, Health, Agriculture and Food Executive Agency (CHAFEA)'s Worskshop on the Preparation of Final ERN Specific Grant Agreement (SGA) Technical and Financial Reports will be held on Monday January 22nd, 2018 in Luxembourg.

  • Mon
    22
    Jan
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Fri
    19
    Jan
    2018
    Brussels, Belgium

    The first meeting of the Scientific Committee of the 101 Genomes Marfan project (P101GM) will take place on January 19th, 2018 in Brussels, Belgium.

    The P101GM is the first pilot project of The 101 Genomes Foundation, a private Foundation that was created in November 2017 by Ludivine Verboogen & Romain Alderweireldt (Chair of the VASCERN Ethics WG and ePAG representative for the Association Belge du Syndrome de Marfan) who are parents of a child with Marfan syndrome. Its aim is to improve the lives of people affected by rare diseases by supporting research and development through the creation of a bioinformatics platform containing genomic and phenotypic cross-data from a cohort of 101 patients.

    The P101GM, dedicated to patients with Marfan syndrome, will aim to offer scientists a bioinformatics platform containing the genomic and phenotypic data of a starting cohort of 101 patients with Marfan syndrome, in the hopes of better understanding the variability and intensity of clinical manifestations seen in this disease. By using the most innovative technological tools currently available, it is hoped that researchers will be able to identify potential modifier genes (genes that affect the expression of one or more other genes) that may play a role in the severity of cardiovascular, skeletal and ocular manifestations seen in patients with Marfan syndrome, which could ultimately lead to the development of new therapeutic approaches.

    The following participants will be present at this first meeting, organised by Ludivine Verboogen and Romain Alderweireldt: Prof Julie De Backer (Chair of the VASCERN HTAD WG), Prof. Anne De Paepe, Prof. Catherine Boileau (AP-HP, Bichat-Claude Bernard Hospital, Paris, France), Dr. Guillaume Smits, Prof. Bart Loeys (member of HTAD WG) and his collaborator Aline Verstraeten, Prof. Paul Coucke, Dr. Marjolijn Renard, Dr. Michel Verboogen, Me Bruno Fonteyn, Annemie T’Seyen and Julien Wolff.

    To find out more information about this exciting new project, click here

  • Thu
    18
    Jan
    2018
    Fri
    19
    Jan
    2018
    Derby, UK

    The VASCERN Paediatric and Primary Lymphoedema Working Group (PPL-WG) has organised a two day face-to-face meeting in Derby, U.K. that will take place from January 18th-19th, 2018.

    On the first day, Prof Vaughan Keeley will give participants the chance to visit the Primary and Paediatric Lymphoedema Clinic at Royal Derby Hospital (Derby Teaching Hospitals NHS Foundation Trust). They will meet the clinic's multidisciplinary team as well as attend the Derby Lymphoedema Service Consultants Meeting in the afternoon. This will be a good opportunity for the PPL-WG to share best practices in patient care and to network.

    The Outcome Measures for Treatment Meeting will be held on the second day, January 19th, 2018, where participants will discuss possible outcome measures for PPL in adults and children (e.g. limb volume measurements, cellulitis index, Quality of Life), the proposed frequency of these measurements, and other important considerations.

    Prof Vaughan Keeley, Dr Sarah Thomis, Dr Nele DeVoodgt, Prof Isabelle Quere, Dr Ruth England, and Katie Riches will all be in attendance.

    Consult the Agenda for Day 1 (January 18th, 2018): PPL WG Clinic Visit Agenda

    Consult the Agenda for Day 2 (January 19th, 2018):  PPL WG Outcome Measures Meeting Agenda

     

  • Thu
    18
    Jan
    2018
    webex

    VASCA WG submeeting on Orphanet classification

  • Tue
    16
    Jan
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    15
    Jan
    2018
    17:30 PM - 18:30 PM (CET)Videoconference call - Webex
  • Wed
    10
    Jan
    2018
    17:00 PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    09
    Jan
    2018

    The ERN Call for Specific Grant Agreement (SGA) for the 2nd year of ERN operation (March 2018-February 2019), under the ERN 5 years Framework Partnership Agreement, has been launched on November, 22nd. The deadline to answer is on January, 9th, 2018.

    VASCERN has signed a 5 years Framework Partnership Agreement (FPA) with the European Commission (2017-2022), therefore is eligible for this European Union funding for ERNs, and was invited to answer this call for a second year SGA.

    We are currently working on our proposal for our 2nd year Action Plan and budget to answer this call.

    Support for ERNs Coordination & Operation is provided by the European Union 3rd Health Programme.

    The European Union is co-funding 60% of the total budget. The maximum amount of EU contribution is 200 000 euros by ERN.

    More information 

    Database of EU 3rd Health Programme co-funded projects

    Database: info on VASCERN Framework Partnership Agreement 

    Database: info on VASCERN Specific Grant Agreement (March 2017-February 2018)

     

  • Tue
    09
    Jan
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Mon
    08
    Jan
    2018
    19:00PM - 20:00PM (CET)Videoconference call - Webex
  • Mon
    18
    Dec
    2017
    EURORDIS headquarters, Paris, France

    EURORDIS organises a ePAG face to face meeting in Paris. Paolo Federici, chair of our VASCERN ePAG group and ePAG representative for HHT will be there, together with Juergen Grunert, patient co-chair for the Medium Sized Arteries WG (vascular Ehlers Danlos), Christina Grabowski (ePAG representative for HHT) and Lise Murphy (ePAG representative for Heritable Thoracic Aortic Diseases).

  • Mon
    18
    Dec
    2017
    5.30 PM (GMT +1)Videoconference call - Webex
  • Wed
    13
    Dec
    2017
    5 PM (GMT +1)Videoconference call - Webex
  • Mon
    11
    Dec
    2017
    7 PM (GMT+1)Videoconference call - Webex
  • Sat
    09
    Dec
    2017
    France

    All information available here 

  • Fri
    08
    Dec
    2017
    10.30 AM (GMT+1)Videoconference call - Webex

    The VASCERN Council meets every 4 months, or more depending on needs. This is the 3rd VASCERN Council meeting, following Vilnius (March) and virtual meeting last July.The Council is chaired by the Coordinator, Members are the Chairs of our Working Groups.

  • Thu
    07
    Dec
    2017
    Fri
    08
    Dec
    2017
    Rome, Italy

    RD-ACTION and DG Sante organise a workshop on "How can ERNs generate, appraise and use clinical practice guidelines, to enhance the impact and deployment of consensus guidelines in national health systems?"

     

  • Thu
    07
    Dec
    2017

    Publication of the call of December 7th!

    JTC 2018: "Transnational research projects on hypothesis-driven use of multi-omic integrated approaches for discovery of disease causes and/or functional validation in the context of rare diseases"

    More information here

  • Tue
    05
    Dec
    2017
    10 AM (GMT +1) Videoconference call - Webex
  • Tue
    05
    Dec
    2017
  • Tue
    28
    Nov
    2017
    6 PM (GMT+1)Videoconference call - Webex

    Following the Paris face to face meeting during the 1st annual seminar, the VASCERN Registry WG meeting #4 will take place place virtually in November.

    The VASCERN Registry WG will discuss:

    • The EU common minimal dataset for Rare disease registration
    • The FAIR principle, which was presented to all by Dr. Marco ROOS during our 1st Annual Seminar
  • Mon
    27
    Nov
    2017
    5 PM (GMT +1)Videoconference call - Webex

    The VASCERN HTAD-WG (Heritable Thoracic Aortic Diseases) monthly virtual meeting takes place every 4th Monday of every month at 5 PM (GMT +1).

    The HTAD-WG will discuss:

    • Patient pathway
    • Clinical guidelines
    • Pills of Knowledge
    • Registry
    • Clinical case
  • Mon
    20
    Nov
    2017
    5.30 PM (GMT +1)Videoconference call - Webex

    The VASCERN PPL-WG (Pediatric and Primary Lymphedema) monthly virtual meeting takes place every 3rd Monday of every month at 5.30 PM (GMT +1).

    The PPL-WG will discuss:

    • Patient pathways
    • Clinical guidelines
    • Clinical case
    • Clinical guidelines
    • Registry
  • Thu
    16
    Nov
    2017
    Videoconference call - Webex

    Ahead of the Clinical Patient Management System (CPMS) launch, the European Commission organises a virtual meeting with the ERN Coordinators

  • Mon
    13
    Nov
    2017
    7 PM (GMT+1)Videoconference call - Webex

    The VASCERN VASCA-WG (Vascular Anomalies) monthly virtual meeting takes place every 2nd Monday of every month at 7 PM (GMT +1).

    The VASCA-WG will discuss, among others:

    • Patient pathway
    • Registry
    • Clinical trial
    • Clinical case
  • Wed
    08
    Nov
    2017
    5 PM (GMT +1)Videoconference call - Webex

    The VASCERN MSA-WG monthly virtual meeting takes now place every 2nd Wednesday of every month at 5 PM (GMT +1).

    The VASCERN MSA-WG will discuss:

    • Patient pathways
    • Patient passports
    • Clinical trial
    • Registry project
    • Clinical case

     

  • Tue
    07
    Nov
    2017
    10 AM (GMT +1) Videoconference call

    VASCERN Patient Group (ePAG - European Patient Advocacy Group) virtual monthly meeting takes place every 1st Tuesday of every month at 10 AM (GMT +1).

  • Tue
    07
    Nov
    2017
    5 PM (GMT+1)Videoconference call - Webex

    VASCERN eHealth WG monthly virtual meeting takes place every 1st Tuesday of every month at 5 PM (GMT+1).

    The eHealth & Training / Education WG works on:

    • VASCERN-APP: A free Mobile Application for IOS and Android, which will enable patients & doctors to find and reach out easily all VASCERN Centers of expertise and Patient Organisations
    • Pills of Knowledge: to develop education material available in several formats, including Videos (eLearning tools)
    • Availability of conferences & videos on YouTube
  • Fri
    03
    Nov
    2017
    8 AM (GMT+1) Videoconference call - Webex

    The HHT-WG monthly virtual meeting takes place every 1st Friday of the month at 8 AM (GMT+1).

    The HHT-WG will discuss patient pathways & complex clinical cases, among others!

  • Wed
    25
    Oct
    2017
    6.30 PM (Central European Summer Time)Videoconference call
  • Mon
    23
    Oct
    2017
    5 PM (Central European Summer Time)Videoconference call
  • Tue
    17
    Oct
    2017
    Sat
    21
    Oct
    2017
    ORLANDO, FLORIDA

    https://www.ashg.org/2017meeting/

  • Mon
    16
    Oct
    2017
    5.30 PM (Central European Summer Time)Videoconference call
  • Sat
    14
    Oct
    2017
    Paris, France

    During our 1st VASCERN Annual Seminar, which took place in Paris on October 13-14, 2017, our 5 Rare Disease Working Groups have conducted parallel face to face 3.5 hours work sessions in the morning on the 14th.

    These RDWG face to face meetings have been very productive and all the 5 RDWG have made a lot of progresses in the implementation of our action plan.

     

  • Sat
    14
    Oct
    2017
    Paris, France

    During our 1st VASCERN Annual Seminar, which took place in Paris on October 13-14, 2017, our Transversal Working Groups have conducted parallel face to face 2 hours work sessions in the afternoon on the 14th.

    The eHealth & Training/Education WG, as well as the Patient Registy WG have met.

    These face to face meetings have been very productive and both WGs have made a lot of progresses in the implementation of our action plan.

  • Fri
    13
    Oct
    2017
    Sat
    14
    Oct
    2017
    Paris, France

    he VASCERN 1st annual seminar will take place in Paris on October 13-14th! This event will gather 80 participants, including all our Members for the first time!

      @VASCERN 

    Follow & tweet with us using #VASCERNdays2017

    All our 31 Healthcare Providers Members will be represented by 1 or 2 representatives. 12 Patient Organisations, Members of our Patient Group (ePAG), will be represented as well.

    Besides our Members, several VASCERN stakeholders (including the European Commission (ERN team, ERN IT team), ERN Board of Member States French representative, EURORDIS, FAIR Database, the European Joint Programme on Rare Diseases Research, ORPHANET, RD-Action) will be here.

    On October 13th, it will be the first face-to-face gathering of all VASCERN Members since the official launch in Vilnius. This will be the opportunity to discuss:

    • The structure and the functionning of the network since March, 2017;
    • The state of play with regard to the implementation of our 1st year action plan (March 2017-February 2018);
    • The patient involvement within VASCERN, in cooperation with EURORDIS;
    • The achievements, challenges and opportunities for ERNs;
    • The VASCERN Terms of Reference during the official VASCERN Board meeting.

    On October 14th, the five VASCERN Rare Disease Working Groups will held parallel working sessions in the morning.

    In the afternoon, the transversal WGs on eHealth-Training & Education and on Patient Registry will gather.

    Programme available here

    Stay tuned to get the latest news about our 1st Annual Seminar!

  • Tue
    10
    Oct
    2017
    Wed
    11
    Oct
    2017
  • Mon
    09
    Oct
    2017
    7 PM (Central European Summer Time)Videoconference call
  • Fri
    06
    Oct
    2017
    8 AM (European time) Videoconference call
  • Tue
    03
    Oct
    2017
    10:00 am (Central European Summer Time)Videoconference call
  • Tue
    03
    Oct
    2017
    5.00pm (Central European Summer Time)Videoconference call
  • Thu
    28
    Sep
    2017
    Fri
    29
    Sep
    2017
  • Wed
    27
    Sep
    2017
    6.30 PM (Central European Summer Time)Videoconference call
  • Mon
    25
    Sep
    2017
    Fri
    29
    Sep
    2017
    Barcelona, Spain

    Every 2 years, ISL Conference welcomes 1.000 doctors and therapy professionals from all over the world, to benefit from new research and innovate solutions to the many issues faced by health practitioners who treat people with lymphatic dysfunction.
    New deadline for abstract submission : 31st March 2017

    More information and registration here

  • Mon
    25
    Sep
    2017
    Videoconference call
  • Mon
    25
    Sep
    2017
    5.00pm (Central European Summer Time)Videoconference call
  • Sun
    24
    Sep
    2017
    Tue
    26
    Sep
    2017
    Uppsala, Sweden

    http://www.nsva.no/

  • Fri
    22
    Sep
    2017
    Sat
    23
    Sep
    2017
    Lyon, France

    The European Society of Vascular Surgery organises its 31th annual meeting in Lyon on September, 22-23rd 2017.

    All information here

  • Wed
    20
    Sep
    2017
    Antwerp, Belgium

    The Aortic Aneurysm Symposium is organised by our HCP Member Prof. Bart Loeys, from the University Hospital of Antwerp (Belgium), in cooperation with Prof. Jolien Roos-Hesselink from the Erasmus Medical Center (Rotterdam, The Netherlands). Several of our HCP Members from HTAD (Heritable Thoracic Aortic Diseases) will make presentations: Prof Julie De Backer (Ghent University Hospital), Prof Yskert von Kodolitsh (University Medical Center Hamburg-Eppendorf)

    More information:

    FlyerAntwerpenmeeting

  • Tue
    19
    Sep
    2017
    Milan, Italy

    The Aortic Dissection Awareness Day in Milan is organised by our Member Dr Alessandro Pini. VASCERN will be presented! All information on the programme here

    Info on the Aortic Dissection Awareness Day

  • Mon
    18
    Sep
    2017
    Fri
    22
    Sep
    2017
    Rome, Italy

    VASCERN will be represented at this international summer school.

    More info here

  • Mon
    18
    Sep
    2017
    5.30 PM (Central European Summer Time)Videoconference call
  • Wed
    13
    Sep
    2017
    Sun
    17
    Sep
    2017
    Geneva, Switzerland

    http://eadvgeneva2017.org/

  • Tue
    12
    Sep
    2017
    10:00 am (Central European Summer Time)Videoconference call
  • Sun
    10
    Sep
    2017
    Wed
    13
    Sep
    2017
    Buenos Aires, Argentina

    International Symposium of Vascular Anomalies.

  • Mon
    28
    Aug
    2017
    12h-13h Barcelona, Spain

    In the framework of the European Society of Cardiology Congress in Barcelona, the VASCERN HTAD-WG will have its monthly WG meeting in person.

  • Sat
    26
    Aug
    2017
    Wed
    30
    Aug
    2017
    Barcelona, Spain

    More info here

  • Mon
    21
    Aug
    2017
    Virtual meeting - Videoconference call

    Monthly meeting of the VASCERN Pediatric and Primary Lymphedema WG.

  • Wed
    26
    Jul
    2017
    Virtual meeting - Videoconference call
  • Tue
    25
    Jul
    2017
  • Mon
    24
    Jul
    2017
    Virtual meeting - Videoconference call
  • Mon
    17
    Jul
    2017
    Virtual meeting - Videoconference call
  • Thu
    13
    Jul
    2017
    Virtual meeting - Videoconference call
  • Tue
    11
    Jul
    2017
    Virtual meeting - Videoconference call
  • Thu
    06
    Jul
    2017
    Sun
    09
    Jul
    2017
  • Tue
    04
    Jul
    2017
    Videoconference call
  • Thu
    29
    Jun
    2017
    Sat
    01
    Jul
    2017
    Prague, Czech Republic

    In Prague, over two days, 14 leading experts will review recent advances across the spectrum of cardiology. Interact with colleagues, exchange information and ideas, and get updated – helping you to provide the best care for your patients!

    Programme: here

    All information and registration here

     

  • Thu
    29
    Jun
    2017
    Fri
    30
    Jun
    2017
    London, UK

    All information and registration here

  • Wed
    28
    Jun
    2017
    Virtual meeting - Videoconference call

    VASCERN MSA-WG Monthly "virtual" meeting takes place every 4th Monday of the month at 5.30pm (GMT+1). The MSA-WG (Medium Sized Arteries - Vascular Ehlers Danlos) will discuss during these meetings all actions to be implemented by VASCERN. Once the Clinical Case Management Platform will be available, the experts will be able to discuss and share expertise for complex clinical cases to provide cross-border healthcare and conduct virtual consultations.

  • Wed
    28
    Jun
    2017
    10.30am (GMT+1)Virtual meeting - Videoconference call
  • Mon
    26
    Jun
    2017
    Virtual meeting - Videoconference call

    VASCERN HTAD-WG Monthly "virtual" meeting takes place every 4th Monday of the month at 5pm (GMT+1). The HTAD-WG (Heritable Thoratic Aortic Diseases) will discuss during these meetings all actions to be implemented by VASCERN. Once the Clinical Case Management Platform will be available, the experts will be able to discuss and share expertise for complex clinical cases to provide cross-border healthcare and conduct virtual consultations.

  • Mon
    26
    Jun
    2017
    Virtual meeting - Videoconference call

    The next VASCERN PPL-WG Monthly "virtual" meeting will takes place on Monday 26th June, at 5pm (GMT+1). The PPL-WG (Pediatric and Primary Lymphedema) will discuss during these meetings all actions to be implemented by VASCERN. Once the Clinical Case Management Platform will be available, the experts will be able to discuss and share expertise for complex clinical cases to provide cross-border healthcare and conduct virtual consultations.

  • Tue
    20
    Jun
    2017
    Wed
    21
    Jun
    2017
    Brussels, Belgium

    On June 20th & 21th, there will be a Joint meeting of the ERN Board of Member States (BoMS) and the ERN Coordinator's Group (ECG). Issues such as: call for new ERN members joining existing networks, affiliated partners, monitoring of ERNs and relationships between ERNs and Industry will be tackled.

    There will be a training session on the clinical case management system.

    The ECG (ERN Coordinator's Group) will meet and discuss issues such as Governance, ERN IT system, eHealth call for ERNs, research, health programme, monitoring & assessment of ERNs.

  • Wed
    14
    Jun
    2017
    Virtual meeting - Videoconference call

    The VASCERN Ethics-WG first virtual meeting will take place on June 14th.

  • Mon
    12
    Jun
    2017
    Virtual meeting - Videoconference call

    VASCERN VASCA-WG Monthly "virtual" meeting takes place every 2nd Monday of the month at 7pm (GMT+1). The VASCA-WG (Vascular Anomalies) will discuss during these meetings all actions to be implemented by VASCERN. Once the Clinical Case Management Platform will be available, the experts will be able to discuss and share expertise for complex clinical cases to provide cross-border healthcare and conduct virtual consultations.

  • Thu
    08
    Jun
    2017
    Sun
    11
    Jun
    2017
    Dubrovnik, Croatia

    Abstract submission here until February 28th

    This International event will gather world’s leading HHT experts in both basic research as well as clinical practice, including our VASCern HHT-WG Chairs and Members.

    Hans Jurgen-Mager, MD, PhD, HCP Representative and Member of the VASCern HHT-WG is also Co-Chair of the Cure-HHT Organising Committee for this international meeting.

    All information and registration available here

  • Thu
    08
    Jun
    2017
    Dubrovnik, Croatia

    In the framework of the Cure HTT 12th International Scientific Conference held in Dubrovnik, Croatia on June 8-11th, our VASCERN HHT-WG Members will have a first VASCERN HHT-WG face-to-face meeting.

  • Tue
    06
    Jun
    2017
    Virtual meeting - Videoconference call

    VASCERN ePAG (Patient Group) representatives are meeting every first Tuesday of the month at 10am (GMT+1) in order to work together, share views and be involved in all VASCERN actions.

  • Tue
    06
    Jun
    2017
    Virtual meeting - Videoconference call

    VASCERN eHealth-WG monthly "virtual" meeting takes place every first Tuesday of the month at 5.30pm (GMT+1). The eHealth-WG works on all the transversal eHealth topics. The WG is especially in charge of the development of the VASCERN Mobile Application, which will facilitate cross-border healthcare and pathways throughout Europe in rare vascular diseases.

  • Thu
    01
    Jun
    2017
    Fri
    02
    Jun
    2017
    Newcastle upon Tyne, UK

    VASCERN will be represented at this workshop.

    "ERNs need to be able to demonstrate their impact across a broad range of fields and activities, which requires carefully-selected indicators and at the same time a monitoring system including Key Performance Indicators should be set up to follow up the activity and caseload of the ERNs."

  • Wed
    31
    May
    2017
    Paris, France

    This workshop is organised by the French Ministry of Research.

  • Fri
    26
    May
    2017
    Sat
    27
    May
    2017
    Stuttgart, Germany

    More information and registration here

  • Mon
    22
    May
    2017
    Videoconference call
  • Fri
    19
    May
    2017
    Sat
    20
    May
    2017
    Budapest, Hungary

    Save the date! All information about the meeting and the patient fellowships are available here

  • Tue
    16
    May
    2017
    Thu
    31
    Aug
    2017

    Call identifier: ERC-2017-AdG

    ERC Advanced Grant Principal Investigators are expected to be active researchers and to have a track record of significant research achievements in the last 10 years which must be presented in the application. There is little prospect of an application succeeding in the absence of such a record, which identifies investigators as exceptional leaders in terms of originality and significance of their research contributions.

    More information in the ERC Work Programme 2017 (pp. 25-28 on AdG)

  • Tue
    16
    May
    2017
  • Wed
    10
    May
    2017
  • Tue
    09
    May
    2017
    Videoconference call
  • Fri
    05
    May
    2017
    Videoconference call

    Meeting organised by EURORDIS with the Patient Group (ePAG) on the development of the ePAG and EURORDIS support

  • Thu
    04
    May
    2017
  • Tue
    02
    May
    2017
    Videoconference call

    The eHealth WG, Chaired by Dr Alessandro Pini, Representative of our Member Centro Malattie Rare  – Marfan Clinic, Milan, Italy, will have its first monthly virtual meeting on May, 2nd. The agenda includes the development of our VASCERN Mobile Application for cross-border healthcare. This Mobile Application (for IOS and Android Smartphone) will enable patients and professionals to easily find all necessary contact information about the expertise centers in rare vascular diseases.

  • Wed
    26
    Apr
    2017
    Thu
    27
    Apr
    2017
  • Tue
    11
    Apr
    2017

    Topic Identification:  SC1-HCO-07-2017

    Stay tuned: here

  • Tue
    11
    Apr
    2017

    Topic identifier: SC1-HCO-03-2017
    Types of action: ERA-NET-Cofund ERA-NET Cofund

    This call should aim at implementing a key area of the PerMed Strategic Research Agenda and be complementary with other funding programmes and activities at European and international level. Proposers are encouraged to include other joint activities including additional joint calls without EU co-funding. This work should be informed by the output of the coordination and support action envisaged in topic SC1-HCO-05-2016 - Coordinating personalised medicine research, without duplicating any of its work.

    The proposed ERA-NET should demonstrate the expected impact on national and transnational programmes as well as the leverage effect on European research and competitiveness, and should plan the development of key indicators for supporting this. Participation of international partners is highly encouraged.

    The Commission considers that a proposal requesting a contribution from the EU of EUR 5 million would allow this specific challenge to be addressed appropriately. Nonetheless, this does not preclude submission and selection of proposals requesting other amounts.

    More information here

  • Tue
    11
    Apr
    2017

    Topic identifier: SC1-PM-03-2017
    Types of action: RIA Research and Innovation action

    Deadline: 11 April 2017

    The aim of this research should be to apply genomics and/or other –omics and/or other high-throughput approaches for the molecular characterisation of rare diseases in view of developing molecular diagnoses for a large number of undiagnosed rare diseases. Undiagnosed rare diseases may range from a group of unnamed disorders with common characteristics to a phenotypically well described disease or group of diseases with an unknown molecular basis. Genetic variability due to geographical distribution and/or different ethnicity should be taken into account as well as genotype-phenotype correlation whenever applicable. In addition, age, sex and gender aspects should be included where appropriate. This large-scale proposal should promote common standards and terminologies for rare disease classification and support appropriate bioinformatics tools and incentives to facilitate data sharing. Existing resources should be used for depositing data generated by this proposal. Molecular and/or functional characterisation may be part of the proposal to confirm diagnosis. The proposal should enable and foster scientific exchange between stakeholders from countries and regions with different practices and strategies of rare disease diagnostics.

    The selected proposal shall contribute to the objectives of, and follow the guidelines and policies of the International Rare Diseases Research Consortium IRDiRC (www.irdirc.org).

    The Commission considers that requesting a contribution from the EU of around EUR 15 million would allow this specific challenge to be addressed appropriately. Nonetheless, this does not preclude submission and selection of a proposal requesting other amounts.

    More information here

  • Tue
    11
    Apr
    2017

    Topic identifier: SC1-HCO-08-2017
    Types of action: CSA Coordination and support action

    Any type of activities that can help less performing countries and regions to build capacities and exploit opportunities to eventually increase their participation in EU funded collaborative projects can be supported.

    The proposals will propose concrete measures for tackling structural barriers to health research and innovation, including those related to capacity, skills, policy, regulatory environment, and economic and socio-cultural factors including gender equality issues and gender dimension in research content.

    More information and call documents here

  • Tue
    11
    Apr
    2017

    Topic identifier: SC1-PM-08-2017
    Types of action: RIA Research and Innovation action

    Deadline: April 11th 2017

    Support will be provided to clinical trials on substances where orphan designation has been given by the European Commission, where the proposed clinical trial design takes into account recommendations from protocol assistance given by the European Medicines Agency, and where a clear patient recruitment strategy is presented. Clinical trials may focus on a range of interventions with an orphan designation, from small molecule to gene or cell therapy, may include novel interventions and/or repurposing of existing and known interventions. The intervention must have been granted the EU orphan designation at the latest on the date of the full proposal call closure. A concise feasibility assessment justified by available published and preliminary preclinical or clinical results and supporting data shall also be provided. Appropriate plans to engage with patient organisations, Member States health authorities and considerations of efficacy/potential clinical benefit as well as early indication on health economics should be integrated in the application. In addition to the clinical trial, proposals may also include limited elements of late stage preclinical research and/or experimental evaluation of potential risks which must be complementary/contribute to the clinical trial(s) carried out within the proposal. The centre of gravity must clearly be the clinical trial(s). The participation of SMEs is encouraged.

    More information and call documents here

  • Tue
    11
    Apr
    2017

    Topic identifier: SC1-PM-02-2017
    Types of action: RIA Research and Innovation action

    Deadline: April 11th 2017

    Proposals should deliver novel concepts for disease-mechanism based patient stratification to address the needs for stratified or personalised therapeutic interventions. The proposals should integrate multidimensional and longitudinal data and harness the power of -omics, including pharmacogenomics, systems biomedicine approaches, network analysis and of computational modelling. The new concepts of stratification should be validated in pre-clinical and clinical studies taking into account sex and gender differences. Applicants are encouraged to actively involve patient associations. The proposals should consider regulatory aspects of clinical practice and commercialisation opportunities. Proposals should focus on complex diseases having high prevalence and high economic impact.

    The Commission considers that proposals requesting a contribution from the EU of between EUR 4 and 6 million would allow this specific challenge to be addressed appropriately. Nonetheless, this does not preclude submission and selection of proposals requesting other amounts.

    More information and call documents: here

  • Tue
    11
    Apr
    2017

    Topic identifier: SC1-PM-10-2017
    Types of action: RIA Research and Innovation action

    Deadline: April 11th 2017

    Proposals should compare the use of currently available preventative or therapeutic (pharmacological as well as non-pharmacological) healthcare interventions in adults[1]. While there is no restriction on the diseases or interventions to be the focus of proposals, preference will be given to proposals focusing on interventions with high public health relevance and socio-economic impact, i.e. interventions addressing conditions that are particularly frequent, may lead to co-morbidities, have a high negative impact on the quality of life of the individual and/or are associated with significant costs or where savings can be achieved. A cost effectiveness analysis must be included. Given the focus on existing interventions, proposals will aim to contribute to improve interventions, take decisions about the discontinuation of interventions that are less effective or less cost-effective than others, and make recommendations on the most effective and cost-effective approaches. A comprehensive array of clinical and safety parameters, as well as health and socio-economic outcomes (e.g. quality of life, patient mortality, morbidity, costs, and performance of the health systems) for chosen populations should be assessed. Agreed core outcome sets (COS) should be used as endpoints in conditions where they already exist, in other cases efforts should be made to agree on such COS. Randomised controlled trials, pragmatic trials, observational studies, large scale databases and meta-analyses may be considered for this topic. Where relevant the study population should address gender as well as socio-economic differentials in health and/or any other factors that affect health equity.

    More information and call documents here

  • Tue
    11
    Apr
    2017

    Topic identifier: SC1-PM-20-2017
    Types of action: RIA Research and Innovation action

    Deadline: April 11th 2017

    More information and call documents here

  • Fri
    07
    Apr
    2017
    Dublin, Ireland

    Organised by Rare Diseases Ireland. Info and registration here

  • Tue
    04
    Apr
    2017
    Videoconference call
  • Fri
    31
    Mar
    2017

    If you follow a cohort of patients with FMD, and are willing to contribute to the European FMD registry and join a network of specialists interested by the clinical and basic aspects of the disease, please contact us (FMD-saintluc@uclouvain.be).

    Read the call here

  • Tue
    21
    Mar
    2017
    Wed
    22
    Mar
    2017
    Madrid, Spain

    The European Commission organises a Workshop on Rare Diseases Registries in Madrid (March 21-22nd), on the dissemination of the 2008-2015 Health Programme results. This is organized in cooperation with the Centre for Biomedical Network Research on Rare Diseases (CIBERER), Instituto de Salud Carlos III - Spanish Ministry of Economy, Industry and Competitiveness. The event will disseminate results of the EU Health Programme co-funded conducted projects and Joint Actions on Registries.

    The future European platform on Rare Diseases Registration, as well as Registries through the European Reference Networks will be tackled.

    Registration until March 20th here

    Agenda here

  • Tue
    21
    Mar
    2017

    Aim: increase knowledge on rare diseases and develop clinical research

    Eligibility: only applicants members of approved ERNs are eligible to be co-funded.

    Scope: from at least 3 countries
    Description: The activities to be carried out concern the creation of 3-4 new registries on rare diseases. These registries should constitute key instruments to increase knowledge on rare diseases and develop clinical research. Collaborative efforts to establish data collection and maintain them will be considered, provided that these resources are open and accessible. Registries should be built with the support and according to the standards set up by the European Platform on rare diseases registration and provide all necessary data to the Platform (taking the relevant data protection rules into account).

    Call text: here

     

    Budget: EUR 1.200.000 (indicative budgetary ceiling per grant to be awarded in 2017 is EUR 400.000, for 3 to 4 registries)

    Deadline: March, 21st

    All information: here

  • Mon
    20
    Mar
    2017
    Valletta, Malta

    This high-level workshop is organised by the Maltese Presidency of the EU Council of the European Union at the Grand Master’s Palace , in parallel to the informal meeting of EU Ministers of Health. The Maltese Presidency has established Rare Diseases as one of its core priorities.

    European Reference Networks will be represented to this meeting.

    "The aim is to discuss the possibilities for structured cooperation in rare diseases research, tools, and healthcare at the EU level and ways of adapting already existing programmes by scaling them up and integrating them under the same umbrella, creating a sustainable ecosystem of knowledge generation."

  • Tue
    14
    Mar
    2017
    Teleconference call
  • Thu
    09
    Mar
    2017
    Fri
    10
    Mar
    2017
    Vilnius, Lithuania

    The European Commission (DG Health) organises the 3rd European Reference Networks Conference on March, 9-10th in Vilnius, Lithuania.

    The ERN Conference will focus on the presentation of the newly 24 approved European Reference Networks, and will be the official launch and start of ERNs (see here the list of approved ERNs).

    There will be an ERN awarding ceremony, introduced by the EU Commissioner for Health, Vytenis Andriukaitis, who will also open the ERN Conference.

    The conference on 9th will tackle topics such as:

    • Coordination, management & governance of ERNs;
    • ERN IT platform as core element for eHealth, telemedicine, sharing of expertise in complex clinical cases;
    • EU policies and support to ENRs (research, registry platform, rare diseases policy…);
    • ERN and national healthcare systems;
    • The way forward with perspectives of Healthcare providers, patient representatives, ERN Coordinators, Member States.

     

    On March 10th, the 24 new ERNs will officially start working with a kick-off meeting!

    VASCERN will hold its first face-to-face Council kick-off meeting on 10th, with a part of VASCERN HCP and Patient representatives (Chairs and co-chairs of VASCERN Working Groups).

    Agenda here

    All information and live webstream on March, 9th here

  • Mon
    06
    Mar
    2017

    Watch the video for the World Lymphedema Day! 

     

  • Sun
    05
    Mar
    2017
    Wed
    08
    Mar
    2017
    Boston, Massachusetts, USA

    All information and registration here

  • Tue
    28
    Feb
    2017

    rdd-logo

    How to get involved and support Rare Diseases Day 2017: here

    All information available here

  • Tue
    28
    Feb
    2017
    University Hospital of Leuven, Belgium

    The European Commission organises a ERN journalist study visit at the University Hospital of Leuven. Prof Guillaume Jondeau, VASCERN Network Coordinator and Dr Sarah Thomis, Univ. Hospital of Leuven HCP Representative, Member of the Pediatric and Primary Lymphedema WG (PPL-WG) will present VASCERN, together with a PPL Patient representative (Be-Lymph).

  • Mon
    27
    Feb
    2017
    Teleconference call
  • Thu
    23
    Feb
    2017

    Being nearly at the half-way point of the 3rd Health Programme which runs from 2014 to 2020, the Commission would like to evaluate whether it is meeting its objectives and whether there is room for improvement.

    Answer here to the EU Consultation on the 3rd European Health Programme ! It is open to any interested parties in order to gather views and opinions on:

    • The objectives and priorities of the 3HP, and the extent to which these are appropriate and in line with health needs in the EU
    • The way the 3HP is implemented, and the extent to which this is effective and efficient
    • The overall added value and usefulness of the 3HP

    More info here

  • Wed
    22
    Feb
    2017
    Thu
    23
    Feb
    2017
  • Sat
    18
    Feb
    2017
    Antwerp, Belgium

    A special event on Marfan Syndrome and Loeys-Dietz is organised by the University of Antwerp and Bindweefsel.be. More information here

  • Tue
    14
    Feb
    2017
    Teleconference call

    VASCERN Vascular Anomalies (VASCA) Working Group Members first meeting as an ERN group

  • Fri
    10
    Feb
    2017
    Geneva, Switzerland

    "The event is the first of its kind to be organised in Geneva and will gather international experts in the fields of public health, human rights, epidemiology, scientific research and patient advocacy to discuss why and how rare diseases should be included in the global health agenda."

    All information and registration here

  • Thu
    09
    Feb
    2017

    Call identifier: ERC-2017-CoG

    Deadline: February, 9th 2017

    ERC Consolidator Grants are designed to support excellent Principal Investigators at the career stage at which they may still be consolidating their own independent research team or programme. Applicant Principal Investigators must demonstrate the ground-breaking nature, ambition and feasibility of their scientific proposal. Principal Investigator shall have been awarded his or her first PhD > 7 and ≤ 12 years prior to 1 January 2017. 

    More information in the ERC 2017 Work Programme (pp. 23-24 on CoG)

  • Wed
    08
    Feb
    2017
    Thu
    09
    Feb
    2017
    Paris, France

    The third conference of the International Rare Diseases Research Consortium (IRDiRC) will take place February 8-9, 2017 in Paris, France.

    All information here Programme here Registration here 

  • Wed
    01
    Feb
    2017

    The aim of the call is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with a clear translational research approach. Projects shall involve a group of rare diseases or a single rare disease following the European definition i.e. a disease affecting not more than five in 10.000 persons in the European Community, EC associated states and Canada.

    The specific objective of this call is to promote research projects focusing on the pre-clinical development of therapeutic approaches in suitable existing animal or cell models.

    Date of publication: December 5th 

    Deadline for proposal pre-registration: February 1, 2017

    Deadline for proposal submission: June 2nd, 2017

    More information here

    Call document: here 

    Call forms: here

    Guidelines: here

     

  • Tue
    31
    Jan
    2017

    The European Commission (DG Health) has launched a new call for proposals for a pilot project in the area of Rare Diseases. This will be founded by the European 3rd Health Programme.

    PP-2-1-2016 - Pilot project — Establishing a Registry of Rare Congenital Malformations (as part of the Rare Diseases Registry), drawing on the structure, organization and experience of the Registry of Congenital Malformations

    • The key objective of this pilot project is to set up a registry of rare congenital malformations as a part of rare diseases national registers. The project should be implemented at a national level.
    • The secondary aim of the project is to provide an example of how to extend an existing birth defects registration and surveillance system to a rare diseases registration system.
    • The birth defects registration system has already been set up in several MSs as part of the EUROCAT surveillance network. The pilot project provides a model for exploring whether a birth defects registry can be extended to form a rare diseases registry.
    • The pilot project should contribute to the development of an EU Platform on Rare Diseases Registration to provide a common access point to data collections on rare diseases across Europe and to be compatible with platform tools.

    Opening: October 27th 2016
    Deadline: January 31st 2017
    Call document: here 
    More information and link for submission here

     

  • Wed
    25
    Jan
    2017
    Sat
    28
    Jan
    2017
    Turin, Italy

    Prof Guillaume Jondeau will present VASCERN at the 20th Turin Meeting on Rare Diseases (ERN Roundtable). The European Commission as well as 5 other ERNs will be there and make presentations!

  • Sun
    15
    Jan
    2017

    The objective of the consultation is to collect information from a wide audience on different aspects of Horizon 2020 implementation. The results of this consultation will feed into the report on the interim evaluation of Horizon 2020, will help the European Commission to improve the implementation of Horizon 2020 and will set the scene for the future discussions on the next EU research and innovation funding post-2020.

    Answer to the consultation here 

    Deadline: January 15th 2017

  • Tue
    10
    Jan
    2017

    All information on the calls for Innovative Training Networks available here

    Deadline: January 10th 2017

  • Thu
    15
    Dec
    2016
    Sat
    17
    Dec
    2016
    Milano, Italy

    The main philosophy of the meeting will be unchanged and our mission will be to offer to the participants an update focused mostly on the practical aspect of vascular surgery through a dynamic format based on rapid paced presentations.

    All information are available here

  • Thu
    15
    Dec
    2016
    Brussels, Belgium

    The ERN Board of Member States (maximum of 2 representatives from each EU Member States and EEA) and will meet on December 15th to take the decision on the approval of the Networks and HCPs positively assessed by the Independant Assessment Body.

    Read the Rules of Procedures of the Board of MS of the ERNs

    More information on the BoMS here

  • Sat
    10
    Dec
    2016
    Brussels, Belgium

    Programme and contact for registration available here

    Read the recent review paper on Fibromuscular Dysplasia and the European FMD initiative , a collaborative research coordinated by Prof. Alexandre Persu, Cliniques Universitaires St Luc, Brussels

  • Thu
    08
    Dec
    2016
    Brussels, Belgium

    During this meetingn, the European Commission will inform ministers on the European reference networks.

    More information here

  • Wed
    07
    Dec
    2016

    COST is the longest-running European framework supporting trans-national cooperation among researchers, engineers and scholars across Europe.

    You can submit your COST Action proposal at any time throughout the year via the new e-COST online submission tool. The next Collection Date is set for December 7, 2016. 

    There will be a next collection date in September 2017.

    All information on COST Action here

    Call documents and guidelines to submit a proposal here

  • Mon
    05
    Dec
    2016

    Conference Call meeting of the VASCern ePAG representatives, organised in cooperation with EURORDIS.

  • Wed
    30
    Nov
    2016

    The next session will take place 5-9th June 2017 in Barcelona.  The deadline for applications is 30th November 2016.

    Info and registration here

  • Tue
    29
    Nov
    2016
    Wed
    30
    Nov
    2016
    Brussels, Belgium

    The conference will specifically celebrate the 10th anniversary of the UN Convention on the rights of persons with disabilities. Presentations and discussions will focus in an interactive way on the progress which has been made in the EU to promote the rights of persons with disabilities, based on the UN Convention.

    All information here

  • Thu
    24
    Nov
    2016
    Rome, Italy

    The aim of the conference is to disseminate the findings from the RARE-Bestpractices project and offer a forum for discussing with relevant stakeholders how this work could be taken into account in delivering better health decision making and health policies for rare diseases.

    More information and registration here

  • Tue
    15
    Nov
    2016
    Thu
    17
    Nov
    2016
    Brussels, Belgium

    All information and registration here

  • Tue
    08
    Nov
    2016
    Tue
    14
    Mar
    2017

    Topic identifier: SC1-PM-19-2017
    Types of action: PPI Public Procurement of Innovative solutions

    Proposals should address as primary aim public procurement of innovative solutions (PPI) to facilitate the deployment of an eHealth infrastructure taking into consideration the European eHealth Interoperability Framework and EU guidelines adopted by the eHealth Network. The PPI(s), and any accompanying innovation activities in particular by participating procurers themselves to facilitate the uptake of newly developed solutions, should focus on clear target outcomes such as allowing the sharing of health information, the use of semantically interoperable Electronic Health Records (EHRs) for safety alerts, decision support, care pathways or care coordination. The scope of the PPI(s) is to specify, purchase and deploy innovative ICT based solutions which can deliver sustainable, new or improved healthcare services across organisational boundaries while implementing eHealth interoperability standards and/or specifications (e.g. EN13606, HL7, Continua Alliance, IHE...).

    The Commission considers that proposals requesting a contribution from the EU of between EUR 3 and 4 million would allow this specific challenge to be addressed appropriately. Nonetheless, this does not preclude submission and selection of proposals requesting other amounts.

    More information and call documents here

  • Tue
    08
    Nov
    2016
    Tue
    14
    Mar
    2017

    Topic identifier: SC1-PM-17-2017
    Types of action: RIA Research and Innovation action

    More information and call documents here

  • Tue
    08
    Nov
    2016
    Wed
    09
    Nov
    2016
    Brussels, Belgium

    The EPF conference “Patient and family empowerment for better patient safety” will explore these issues, including:
    •The ethics of patient involvement in safety: taking responsibility or being burdened with responsibility?
    •Challenges for patient empowerment and involvement in acute care settings
    •Challenges for healthcare professionals: is a fundamental culture change needed?
    •Communication: a risk factor or an opportunity to improve safety?

    All info here

  • Sun
    30
    Oct
    2016
    Thu
    03
    Nov
    2016
    Boston, US

    All information and registration here

  • Fri
    28
    Oct
    2016
    Sun
    30
    Oct
    2016
    Boston, USA

    All information and registration here

  • Wed
    26
    Oct
    2016
    Thu
    27
    Oct
    2016
    Chicago, Illinois, US

    ConferenceSeries and its subsidiaries including iMedPub LLC and Conference Series LLC Organise 3000+ Conferences across USA, Europe & Asia with support from 1000 more scientific societies and Publishes 700+ Open Access Journals which contains over 50000 eminent personalities, reputed scientists as editorial board members.

    All information and registration here

  • Mon
    24
    Oct
    2016
    Brussels, Belgium

    Conference on cross-border healthcare Directive “Towards amplified awareness of EU rights to cross-border care” - European Commission

    The conference aims mainly at:

    • Improving information provision to enable patients to cross-border healthcare;
    • Fostering better coordination between NCPs;
    • Amplifying NCP cooperation with patient organisations, healthcare providers and healthcare insurers for the benefit of patients.

    More information here

  • Thu
    20
    Oct
    2016
    Paris, France

    The French Rare Diseases Foundation (Fondation Maladies Rares) organises a seminar (in French) on Social and Human Sciences (SHS) projects and Rare Diseases. It includes a session on primary lymphoedema and financial inequalities in access to care.

    Draft programme: here

  • Wed
    19
    Oct
    2016
    Thu
    20
    Oct
    2016
    Cap Town, South Africa

    The purpose of this conference is to provide a global forum for all stakeholders within the Rare Diseases field, both locally and abroad, to participate in open discussion, enhance models of best practice and share specialist knowledge around rare diseases and orphan drugs. Incorporating the annual International Conference on Rare Diseases and Orphan Drugs (ICORD) for 2016, RareX has an extended program, to incorporate patients, their families and caregivers as well as support groups and minority groups within the rare disease community.

    All information and registration here

  • Fri
    14
    Oct
    2016
    Brașov, Romania

    This initiative consists of a series of half-day events where national research communities are informed by representatives of the COST Association about the COST Framework’s policies, activities and funding opportunities, with an emphasis on the Open Call for new COST Actions proposals.

    Information and registration here

  • Tue
    11
    Oct
    2016
    Wed
    12
    Oct
    2016
    Paris, France

    MAIN OBJECTIVES

    • To provide an overview of the latest scientific developments and challenges related to the use of ICT in medical research
    • To reflect on the regulatory, sociological, ethical, logistical and methodological framework for using ICT in medical research
    • To assess the state-of-the-art on the subject at an international level
    • To present, during innovation sessions, the products or solutions under development that could be applied in medical research
    • To promote partnerships between academic researchers and R&D scientists from the e-health industry
    • To increase public-private networking to develop long-term collaborations around ICT
    • To create the conditions for the collaborative development of tomorrow’s medical research

    All information and registration here

  • Mon
    10
    Oct
    2016
  • Wed
    28
    Sep
    2016
    Thu
    29
    Sep
    2016
    Brussels, Belgium

    RD-Action, the European initiative supporting the rare disease community and especially the ERN project, organises a 2-days Workshop on "Exchanging data for virtual care within the ERN Framework". The overall aim of this workshop is to generate and agree guidance and good practices for ERNs to collect and share data for care within the framework of ERNs. Potential Coordinators of the ERN project proposals being currently assessed by the European Commission have been invited to attend.

     

  • Tue
    27
    Sep
    2016
    Barcelona, Spain

    "Bringing solutions to young rare disease patients"

    Let's discuss the paediatric regulation

    All information here 

  • Mon
    26
    Sep
    2016
    Fri
    30
    Sep
    2016
    National Centre for Rare Diseases, Rome

    The two events intend to promote the establishment of Findable, Accessible, Interoperable and Reusable (FAIR) Rare Disease (RD) registries in compliance with the IRDiRC and EU Recommendations and to support cooperation among different registry stakeholders and coordination with registries that are developed within National Plans in the EU in the field of rare diseases.

    All information available:  here

  • Mon
    26
    Sep
    2016
    Brussels, Belgium

    The European Reference Network Board of Member States next meeting will take place in Brussels on September, 26th. The Member States representatives should discuss the 24 ERN Project Proposals which were submitted to the European Commission (DG Sante).

  • Thu
    22
    Sep
    2016
    Fri
    23
    Sep
    2016
    Washington Capital Hilton in Washington, DC

    The 4th, and final, GenTAC Thoracic Aortic Disease Summit will be held September 22-23, 2016 at the Washington Capital Hilton in Washington, DC. The previous 3 Thoracic Aortic Disease Summits brought together prominent clinical, translational and basic scientists who presented research on disease etiology, pathogenesis, progression and treatment. This meeting will be held to continue sharing new findings from GenTAC and the research community, to discuss the current advances regarding disease pathogenesis, progression, and treatment and to identify future directions for the field.

    More information here

  • Thu
    22
    Sep
    2016
    Fri
    23
    Sep
    2016
    Paris, France

    This International Conference will cover a vast range of topics, related to how “Engaging stakeholders for responsible Stem Cells research”. Our aim is to create a Task Force for improving the collaboration of  key stakeholders involved in the questions raised by the use of stem cells.

    More information here

  • Wed
    21
    Sep
    2016
    Sat
    24
    Sep
    2016
    Barcelona, Spain

    The 17th Biennial Meeting of the European Society for Immunodeficiencies (ESID 2016) offers unparalleled access to the latest research and analysis in the field of immunodeficiencies.

    More information and registration here

  • Mon
    19
    Sep
    2016

    More information: here and on the Facebook page here

  • Sat
    17
    Sep
    2016
    Waterloo, Belgium

    The Center for Vascular Anomalies (FR / EN)at Cliniques universitaires Saint-Luc in Brussels, Belgium, which takes care of a whole variaty of pathologies within the field of Vascular anomalies, organise its 25 years anniversary event on September, 17th. This HCP is represented in VASCern by Pr. Laurence BOON and Pr. Miikka VIKKULA, and Chair the VASCA-WG.

    More information on this event and registration here

  • Wed
    14
    Sep
    2016
    Sat
    17
    Sep
    2016
    Heidelberg, Germany

    Through the tremendous advances in the technology of mass spectrometry-based proteomics and its applications, the research has expanded to most areas of biology that deal with proteins. This conference will focus on the application of proteomics to cell biology and unraveling disease mechanisms by addressing conceptually novel ways to study long-standing questions in these fields.

    Topics

    • Cell Biology
    • Cell Signaling
    • Omics in Biology
    • Interaction proteomics
    • Chromatin proteomics
    • Genetics and disease

    More information and registration here

  • Mon
    12
    Sep
    2016
    Wed
    14
    Sep
    2016
    Berlin, Germany

    Genomics-2016 welcomes members around the world focused on learning about Genomics & Pharmacogenomics and its advances; this is your best opportunity to reach the largest assemblage of participants from the Genomics and its allied areas.

    More information and registration here

  • Thu
    08
    Sep
    2016
    Fri
    09
    Sep
    2016
    Ågrenska, Gothenburg, Sweden

    As part of the European project INNOVCare, EURORDIS is organising a workshop on “Integrated Care for People Living with Rare Diseases” - 8-9 September, Gothenburg. Focus on: developing a pilot care pathway, using “case management” to link health, social and community services supporting people with a rare disease.
    agenda
    Registration: contact raquel.castro@eurordis.org before July, 15th

  • Sat
    27
    Aug
    2016
    Wed
    31
    Aug
    2016
    Rome, Italy

    The world's largest and most influential cardiovascular congress.

    All information here

  • Tue
    02
    Aug
    2016
    Tue
    05
    Sep
    2017

    The ERC Proof of Concept Grants aim to maximise the value of the excellent research that the ERC funds, by funding further work (i.e. activities which were not scheduled to be funded by the original ERC frontier research grant) to verify the innovation potential of ideas arising from ERC funded projects. Proof of Concept Grants are therefore on offer only to Principal Investigators whose proposals draw substantially on their ERC funded research.

    More information in the ERC Work Programme 2017 (pp. 36-42)

  • Tue
    26
    Jul
    2016
    Tue
    18
    Oct
    2016

    Call identifier: ERC-2017-StG

    ERC Starting Grants are designed to support excellent Principal Investigators at the career stage at which they are starting their own independent research team or programme. Applicant Principal Investigators must demonstrate the ground-breaking nature, ambition and feasibility of their scientific proposal. Principal Investigator shall have been awarded his or her first PhD ≥ 2 and ≤ 7 years prior to 1 January 2017.

    More information in the 2017 ERC Work Programme (see pp. 21-22 for Starting Grants)

     

  • Tue
    12
    Jul
    2016
    Online

    The EURATOM Programme  aims to pursue nuclear research and training activities with an emphasis on continually improving nuclear safety and security, but there is also space for health-related projects under the fields of nuclear medicine, radiation protection and development of medical applications of radiation, including, inter alia, the secure and safe supply and use of radioisotopes.

    All information and registration here

  • Fri
    08
    Jul
    2016
    Brussels

    The InfoDay on H2020 Program for Health, Demographic Change and Wellbeing, will help interested stakeholders to find out information about the upcoming calls, development of a H2020 project proposal, partnerships, etc.

    More info here

  • Thu
    30
    Jun
    2016
    Berlin, Germany
    • Connecting and exchanging each in the worlds fastest growing business
    • Hear and learn best practises how to implement innovation in corporate culture
    • Solving healthcare challenges together
    • Accelerating transforming healthcare in digital times
    • Validate the economics of digital health and how consumer are likely to react to inception
    • Identify business opportunities within emerging markets healthcare system

    All information here

  • Thu
    02
    Jun
    2016
    Fri
    10
    Jun
    2016
    Amsterdam

    eHealth Week 2016 is organised by the Dutch Ministry of Health as part of the Dutch Presidency of the Council of the European Union, the European Commission and HIMSS Europe. This year’s educational programme will focus on three main themes: Empowering People, Trust & Standards and Social Innovation & Transition.

    More information and registration here

  • Wed
    01
    Jun
    2016
    Thu
    02
    Jun
    2016
    Brussels

    The European Commission, DG Research and Innovation, organise a conference on Personalised Medicine. This two days event aim to foster research on Health new technologies, innovation, sustainable health. More information and inscription on the European Commission dedicated page here

  • Thu
    26
    May
    2016
    Sat
    28
    May
    2016
    Edimbourg

    The European Conference on Rare Diseases and Orphan Products is organised by EURORDIS - the association which represents the Voice of Patient Organisations throughout Europe - with the support of the European Commission. It will be an opportunity to meet all European Partners and stakeholders involved in Rare Diseases, thus fostering European cooperations. More info and registration here

  • Wed
    25
    May
    2016
    Brussels

    ERN Coordinators applicants are going to meet in Brussels on May, 25th with the European Commission. During this meeting, the status of ERN applications, progresses and difficulties will be discussed.

  • Wed
    18
    May
    2016
    Fri
    20
    May
    2016
    Tübingen (Germany)

    This congress will address  topics such as : high-throughput methods and data analysis, functional imaging in multiomics approaches, application of PM in clinical decision making and translation of PM into clinical trials in state of the art lectures, hands on workshops and interactive discussion rounds.

    More information here

  • Thu
    12
    May
    2016
    Fri
    13
    May
    2016
    Oslo

    The European Programme for Research and Innovation, Horizon 2020, cofunds research projects in the field of Rare Diseases (call H2020 2016-2017) : New therapies for Rare Diseases and Diagnostic characterisation of rare diseases. The Norvegian Council for Research, together with the French Institute of Oslo organise this event in order to gather Project leaders and potential European partners from the scientific community around research projects in Rare Diseases.

    Programme and registration

     

  • Tue
    03
    May
    2016
    Fri
    06
    May
    2016
    New York

    The International Symposium on Ehlers-Danlos Syndrome will take place in New York between May 3–6, 2016. All information can be found here

    The Vascular Committee includes several of our ERN Members, who are dealing with vascular Ehlers-Danlos Syndrome (vEDS) in the framework of our Medium Size Arteries Diseases Working Group : Pr. Julie De Backer, Dr. Leema Robert, Pr. Xavier Jeunemaître, and further partners.

  • Thu
    07
    Apr
    2016
    Brussels

    The ERN Call for proposal 2016 was released on March, 16th, with a deadline on June, 21st. This first ERN Info Day aims to gather all stakeholders interested and currently drafting ERN proposals to explain the Call as well as to answer all questions.

  • Wed
    06
    Apr
    2016

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