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, 11 representatives from our 7 Affiliated Partners and 20 European Patient Advocate Group (ePAG) patient advocates, as well as 26 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 monthly meeting of this interERN Working Group will take place online on October 27th, 2020 at 10:30 AM (CET). Romain ALDERWEIRELDT will be representing VASCERN as the Chair of this WG.

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

Due to the recent global updates with COVID-19, the Society has decided to postpone the European Learning Conference and HEDGE study screening in Paris, France, which was due to take place March 21-22, 2020.⁠

Both the conference and the HEDGE screening have been rescheduled for November 7-8, 2020. November 7, 2020, will be health professionals day (in place of March 21) and November 8, 2020, will be community day for patients, their families and caregivers (in place of March 22).⁠

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.

For both Professionals Day and Patients Day, sessions will be translated into Spanish, French, German, Dutch, and Italian.

For more information, click here.

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

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

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

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

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

The ERN Coordinators Group Meeting will take place on November 26-27th, 2020 in Brussels, Belgium. Professor Jondeau and Marine Hurard will be attending.

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 International Congress Of Research On Rare And Orphan Diseases, co-organized with IRDiRC and EJP-RD, has been postponed due to the COVID-19. The event was due to take place from March 11th to 14th, 2020 and will now take place from January 13th to 16th, 2021.

• To see the agenda: click here
• To see the time table: click here
• To register: click here

The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark, from May 6-8, 2021 (new dates due to COVID-19).

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 on Saturday, May 8th, 2021.

See the preliminary programme here.

For more information, check out their website here.

Due to the 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 June 14th -16th, 2020 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.