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.

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/

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.

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

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

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

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

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

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!

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 here: https://www.ejprarediseases.org/event/training-for-patient-representatives-and-advocates-on-leadership-and-communication-skills/

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

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

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

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.

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

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

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

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/

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

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

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/

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 team, EJP-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

CureHHT would like to invite you to join us in Estoril, Cascais, Portugal for the 14^th HHT International Scientific Conference. We will host a Welcome Reception on September 28^th 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/

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

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/

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

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

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

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

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

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/

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

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

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

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

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

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/

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

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 1^st!

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

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

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

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

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 here: https://www.ejprarediseases.org/event/modelling-simulation-research-methodologies-for-small-populations-in-rare-diseases/

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

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/

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

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

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

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 Drosophila, C. 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 here: https://www.ejprarediseases.org/event/ejp-rd-ern-workshop-functional-exploration-of-genetic-variants-in-cardiac-diseases/

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

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

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

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

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

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

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

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/

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

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/

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/

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.

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

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

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

The MOOC (Massive Open Online Course) "Diagnosing Rare Diseases: from the Clinic to Research and back" co-developed by EJP RD, ERN Ithaca, ERN 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.

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

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

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

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/

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

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

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/

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

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

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

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

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

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

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

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

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/

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

The 10^th 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

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

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

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

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.

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

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

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

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

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

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

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

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

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 team, EJP-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

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.

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

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 databases. Registration 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/

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

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

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

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

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

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

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

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

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.

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

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!

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

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

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

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.

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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.

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

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

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

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.

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

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.

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

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

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.

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

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!

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.

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

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

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

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

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

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

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.

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

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.

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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.

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

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

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.

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

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.

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

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

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

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

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

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

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

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.

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.

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-RD, the French Ministry of Health, AP-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 22^nd

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 24^th

 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

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

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

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

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

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.

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/

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

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

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.

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).

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

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

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

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).

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

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.

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

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

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

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.

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

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

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

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

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

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.

• BRIS
• Cybersecurity
• eArchiving
• eHealth 
• eProcurement
• European Digital Media Observatory
• European Platform for Digital Skills and Jobs
• Public Open Data

Register here

For agenda and more information, visit the event page here

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 15^th to July 17^th 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.

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

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.

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

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

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.

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.

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).

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

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 

The VASCERN VASCA-WG Monthly Meeting will take place on June 17th, 2020 at 3:45 pm (Paris time).

Professor Jondeau and Marine Hurard will be attending the ERN Coordinators Group Meeting, which will occur online on June 17th, 2020.

The Internal ERN Coordinator's Group Meeting will take place online on June 15th, 2020 at 6:30PM.

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).

The VASCERN ePAG Monthly Meeting will be taking place on June 9th, 2020 from 10 am to 11:30 am (Paris time).

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.

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).

The VASCERN MSA-WG Monthly Meeting will be taking place on June 3rd, 2020 at 6 pm (Paris time).

The VASCERN HTAD-WG Monthly Meeting will take place on May 25th, 2020 at 5 pm (Paris time).

The VASCERN VASCA-WG Monthly Meeting will take place on May 20th, 2020 at 3:45 pm (Paris time).

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.

Due to the COVID-19 novel coronavirus pandemic, the International Society for the Study of Vascular Anomalies (ISSVA) 23^rd 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.

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.

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:

Please note all personal data collected will only be used to send the links and will be deleted after the webinar.

The VASCERN ePAG Monthly Meeting will be taking place on May 12th, 2020 from 10 am to 11:30 am (Paris time).

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).

The VASCERN HTAD-WG Monthly Meeting will take place on April 27th, 2020 at 5 pm (Paris time).

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

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

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

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.

The VASCERN HHT-WG Monthly Meeting #36 will take place on March 20th, 2020 at 8 am (Paris time).

The VASCERN PPL-WG Monthly Meeting will take place on March 16th, 2020 from 5:30 pm to 6:30 pm (Paris time).

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

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:

• A Manifesto signed by 23 European patient associations, currently available in English, Portuguese, German, Italian and Dutch
• A World Lymphedema Day factsheet
• Overview document for how to celebrate World Lymphoedema Day

More information on the World Lymphedema Day website here.

The VASCERN MSA-WG Monthly Meeting will be taking place on March 4th, 2020 at 6 pm (Paris time).

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.

The VASCERN HHT-WG Monthly Meeting #35 will take place on February 28th, 2020 at 8 am (Paris time).

The VASCERN HTAD-WG Monthly Meeting will be taking place on February 24th, 2020 from 5 pm to 6 pm (Paris time).

The first meeting of the Knowledge Generation Working Group of 2020 will be held on February 20th, 2020 at 11 am.

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

The VASCERN VASCA-WG Monthly Meeting will be taking place on February 19th, 2020 from 3:45 pm to 5 pm (Paris time).

The 9th VASCERN Council Meeting will take place on February 19th, 2020 from 5:30 pm to 7 pm (Paris time).

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

The VASCERN PPL-WG Monthly Meeting will take place on February 17th, 2020 at 5:30 pm (Paris time).

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

The VASCERN MSA-WG Monthly Meeting will take place on February 5th, 2020 at 6 pm (Paris time).

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.

The VASCERN HTAD-WG Monthly Meeting will take place on January 27th, 2020 from 5 pm to 6 pm (Paris time).

The VASCERN HHT-WG Monthly Meeting #34 will take place on January 27th, 2020 at 8 am (Paris time).

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

The VASCERN PPL-WG Monthly Meeting will take place on January 20th, 2020 from 5:30 pm to 6:30 pm (Paris time).

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