This month we have the pleasure to talk to Professor Elisabetta Buscarini, Deputy Co-Chair of the Hereditary Hemorrhagic Telangiectasia Working Group (HHT WG), from Crema, Italy. Prof Buscarini shares with us what she feels is the greatest challenge of working in the rare disease field (and the solution to overcome…
VASCERN Newsletter #37 - February 2020
VASCERN Spotlights: Professor Elisabetta Buscarini
 |
Rare Disease Day 2020
This year, Rare Disease Day fell on the rarest day of the year, Saturday February 29th, 2020 (a leap year)! In France we were lucky enough to attend an event… |
 |
New VASCERN Affiliated Partner from Cyprus!
With the bilateral agreement signed we are happy to welcome our newest affiliated partner: The Cyprus Institute of Neurology and Genetics, from Nicosia, Cyprus! This Associated National Center will participate… |
 |
New ePAG patient advocate for Pediatric and Primary Lymphedema from Spain
We are very pleased to announce that Juan Lameiro has joined VASCERN as patient advocate of the European Patient Advocate Group (ePAG) for Pediatric and Primary Lymphedema (PPL). Juan is from Spain… |
 |
Chan Zuckerberg Initiative to fund 30 rare disease patient groups!
Great news for the rare disease community: a funding program introduced by the Chan Zuckerberg Initiative (CZI) has selected 30 rare disease patient-led organizations to make up the new Rare As… |
 |
New VASCERN Affiliated Partner from Luxembourg!
We are very pleased to welcome Centre Hospitalier de Luxembourg from Luxembourg as a new VASCERN Affiliated Partner! This National Coordination Hub will be represented by Professor Klaus Kallenbach, cardiac surgeon, who… |
 |
New ePAG patient advocate for Pediatric and Primary Lymphedema from the Netherlands
It's time to meet another of the Pediatric and Primary Lymphedema patient advocates that have recently joined the VASCERN European Patient Advocacy Group: Eline Hoogstra. Eline is from the Netherlands… |
 |
New VASCERN Affiliated Partner from Malta!
We are very happy to officially announce that Mater Dei Hospital from Malta is now a VASCERN Affiliated Partner! This National Coordination Hub is represented by Dr. Maryanne Caruana, cardiologist,… |
 |
Rare disease patients’ preferences on data sharing and protection survey results out now!
The results from the latest Rare Barometer Voices survey entitled Rare disease patients’ preferences on data sharing and protection, have now been published on the EURORDIS website via a summary… |
 |
Swedish version of Severe/Rare Infantile Hemangioma Patient Pathway now online
The Vascular Anomalies Working Group (VASCA WG)‘s first patient pathway, Severe/Rare Infantile Hemangioma, has now been translated into Swedish. Access it here This means that the pathway is now available in 5… |
-
Wed04Mar202018:00PM-19:00PM (CET)WebEx
The MSA WG monthly meeting will be taking place on March 4th 2020 at 6pm (CET).
-
Thu05Mar2020Fri06Mar2020Italy
Synergies for defining domain specific "common data elements" across ERNs is a workshop that will take place on 05-06 March 2020 at the JRC premises in Northern Italy (close to Milan).
VASCERN's Registry Working Group Chair, Professor Leo Schultze Kool, will be in attendance at this event.
-
Fri06Mar2020Worldwide
World Lymphoedema 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.
More information here
-
Tue10Mar202010:00 amZoom
The VASCERN ePAG monthly meeting will be taking place on the 10th of March 2020 from 10 am to 11:30 am (CET).
-
Wed11Mar2020Sat14Mar2020Berlin, Germany
-
Mon16Mar202017:30PM-18:30PM (CET)WebEx
The PPL WG monthly meeting will take place on the 16th of March from 5:30 pm to 6:30 pm (CET).
-
Wed18Mar202015:45PM-17:00PM (CET)WebEx
The VASCA WG Monthly meeting will be taking place on March 18th 2020 from 3:45 pm to 5pm (CET).
-
Fri20Mar20208:00AM-9:00AM (CET)Videoconference call - Webex
The VASCERN HHT WG monthly meeting #36 will take place on March 20th, 2020 at 8 am (Paris time).
-
Sat21Mar2020Sun22Mar2020Paris
The Ehlers-Danlos Society brings together the leading world experts to discuss the latest medical and scientific information about the Ehlers-Danlos syndromes and hypermobility spectrum disorders.
The conference covers two separate days: March 21, 2020 is Health Professionals Day and March 22, 2020, is Patients Day for those who have EDS and HSD and their families.
For both Professionals Day and Patients Day, sessions will be translated into Spanish, French, German, Dutch, and Italian.
For more information, click here.
-
Mon23Mar202017:00PM-18:00PM (CET)WebEx
The HTAD WG Monthly meeting will take place on January 23rd 2020 from 5pm to 6pm (CET).
-
Tue31Mar2020Brussels, Belgium
The 7th ERN IT Advisory Group Meeting will take place in Brussels, Belgium on Tuesday March 31st, 2020. Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, will be present at this event.
-
Tue12May2020Fri15May2020Vancouver, Canada
The International Society for the Study of Vascular Anomalies (ISSVA) will host ISSVA 2020, the 23rd Workshop for the Study of Vascular Anomalies, in the beautiful city of Vancouver, in British Columbia, Canada from May 12-15, 2020.
The Scientific Program will be a venue to present the latest advances in research and science in vascular anomalies. It will also feature introductory and advanced sessions that attendees can use to increase their knowledge in the fundamentals and advanced topics in the field. ISSVA 2020 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.
The ISSVA Workshop has continuously grown thanks to your dedication to the field and participation in the meeting. We invite you to participate in ISSVA 2020 to help us continue this trend of knowledge sharing through oral presentations, difficult cases, and poster sessions.
More information here
-
Fri15May2020Paris, France
VASCERN's Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) will hold their a face-to-face meeting on May 15th, 2020 in Paris France.
-
Fri15May2020Sat16May2020Stockholm, Sweden
The 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020) will be held at the Stockholmsmässan Congress Center in Stockholm, Sweden on 15 to 16 May 2020.
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 a proud an Associate Partner of this event.
Submissions for poster abstracts are open until February 10th, 2019. 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.
-
Thu04Jun2020Fri05Jun2020Helsinki, Finland
The PPL WG face-to-face meeting will take place at Helsinki University Hospital from June 4th to 5th, 2020 in Finland.
-
Thu11Jun2020Fri12Jun2020Lyon, France
The HHT face-to-face meeting will take place from June 11th to 12th, 2020 at Hôpital Louis Pradel - Hospices Civils de Lyon, in Lyon, France.
-
Wed24Jun2020Thu25Jun2020Paris, France
The Medium-Sized Arteries Working Group (MSA-WG)'s face-to-face meeting will take place from June 24-25th, 2020 at the HEGP Hôpital Européen Georges Pompidou in Paris, France.
-
Mon29Jun2020Tue30Jun2020Brussels, Belgium
Prof. Jondeau and Marine Hurard will be attending the ERN Coordinator's Group meeting on June 29th, 2020 in Brussels, Belgium.
-
Wed15Jul2020Fri17Jul2020Kartause Ittingen, Warth
The 8th Rare Diseases Summer School organized by radiz – Rare Disease Initiative Zurich, which will take place in the Kartause Ittingen, Warth (Canton Thurgau; close to Zurich) from July 15th to July 17th 2020.
The Summer School will contain lectures by national and international rare disease experts, workshops, and poster presentations by participants.
A high faculty-to-student ratio will allow participants to optimally benefit from the varied expertise of the faculty.For more information, go to their website.
-
Sat29Aug2020Wed02Sep2020Amsterdam, The Netherlands
The European Society of Cardiology (ESC) Congress 2020 will take place in Amsterdam, The Netherlands from August 29th- September 2nd, 2020.
For more information visit the event's website here
-
Thu01Oct2020Sat03Oct2020Copenhagen, Denmark
The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark from October 1-3, 2020.
For more information, check out their website here
-
Thu26Nov2020Fri27Nov2020Brussels, Belgium
Marine Hurard and Professor Jondeau will be attending the ERN Coordinators Group Meeting that will take place on November 11th, 2020 in Brussels, Belgium.
-
Tue03Mar2020
The Call for the Research - European Joint Programme on Rare Diseases (EJP RD) Networking Support Scheme (NSS) is now open!
The scheme will provide financial support to applicants for fostering organization of workshops or conferences for new research networks or existing/expanding research networks to strengthen collaborations and to enable exchange of knowledge.
Eligible applicants to apply for the NSS are health care professionals, researchers and patient advocacy organizations from the following countries involved in the EJP RD (in alphabetical order):
Armenia*, Austria, Belgium, Bulgaria*, Croatia*, Czech Republic*, Denmark, Estonia*, Finland, France, Germany, Georgia*, Greece, Hungary*, Ireland, Israel, Italy, Latvia*, Lithuania*, Luxembourg, Malta*, Norway, Poland*, Portugal, Romania*, Serbia*, Slovakia*, Slovenia*, Spain, Sweden, Switzerland, The Netherlands, Turkey*, United Kingdom.
The countries that are indicated with an asterisk (*) are usually seen as underrepresented countries.
At least one Principal applicant and two co-applicants from three different countries mentioned above have to apply together for support of a Networking event.
Maximum budget for networking event: € 30,000
The NSS is open on a continuous basis. The applications will be collected on the following dates in 2020:
March 3, 2020 at 14:00 (CET)
June 2, 2020 at 14:00 (CEST)
September 1, 2020 at 14:00 (CEST)
December 1, 2020 at 14:00 (CET)
All information, including the call documents, can be found on the EJP-RD website here
-
Mon16Mar2020
The European Joint Programme on Rare Diseases (EJP RD) Research Mobility Fellowship call aims to financially support young investigators to undertake short scientific visits (secondments) fostering specialist research training outside their countries of residence and within one of the ERN host institutions. The research mobility fellowships cover stays of 2 weeks up to 3 months.
Target: PhD students and young Medical Doctors (having finished their first year of specialist training)
Applicants’ profile: PhD students with a minimum of one year of research experience OR Physicians having finished their first year of specialist training AND Affiliated to an ERN institution.
Deadline for submissions: 16th of March 2020
For application forms and all other information on this call, go to the EJP-RD info page here.
