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October 31 2017

VASCERNdays2017: Success of our First Annual Seminar!


More than 80 participants gathered during the VASCERN days 2017, our 1st 2 days Annual Seminar, which took place in Paris on October 13 & 14, 2017.

A big thank you to all our participants & speakers!

Our Healthcare Providers Members were represented by 1 or 2 representatives, as well as 12 Patient Organisations, Members of our Patient Group (ePAG). Several VASCERN stakeholders (including the European Commission (ERN team, ERN IT team), the ERN Board of Member States French representative, EURORDIS, FAIR Database, the European Joint Programme on Rare Diseases Research, ORPHANET, RD-Action) were equally in attendance.

On October 13th, it was the first face-to-face gathering of all VASCERN Members since the official launch in Vilnius, therefore our Kick-off Board meeting. It was the opportunity to discuss:

  • The structure & the functioning of VASCERN since March, 2017;
  • The state of play with regard to the implementation of our 1st year action plan (March 2017-February 2018): our WGs Chairs gave us an update on their progress!
  • The patient group involvement within VASCERN, in cooperation with EURORDIS;
  • The achievements, challenges and opportunities for ERNs;
  • The VASCERN Terms of Reference during the official VASCERN Board meeting.

The Networking evening & dinner was a very good opportunity for our Members Members to mingle and get to know each other!

On October 14th, the five VASCERN Rare Disease Working Groups held parallel face-to-face work sessions (lasting 3.5 hours) in the morning.

These RDWG meetings have been very productive.

During the afternoon, 2 Transversal Working Groups, the eHealth & Training/Education WG and the Patient Registy WG have conducted parallel face to face 2 hours work sessions.

All the WGs have made a lot of progress in the implementation of our action plan.

Satisfaction Survey

To the participants: if you did not get a change to complete the satisfaction survey in Paris, you still have the chance to give us your feedback!

Please complete this online survey by Wedneday Nov 8, 2017 so that we can collect all of the results for the full report of our first annual seminar that will be out next month.

Satisfaction Survey: VASCERN’s 1st Annual Seminar, 13-14 October, 2017

Report coming soon

A report of our 1st annual seminar will be available, including videos currently being edited!


List of participants

WG participant lists


Welcome by Prof Guillaume Jondeau and introduction of participants

VASCERN Structure and Organisation

VASCERN Patient Group (ePAG) (Matt Bolz-Johnson, EURORDIS & Paolo Federici, Patient Group Chair)

VASCERN 1st Year Action Plan: state of play

The ERN Policy (Anna Carta, ERN Team, DG SANTE, European Commission) & The ERN Collaborative Platform and the Clinical Patient Management System (Jean-Marie Misztela, Team Leader ERN IT project, European Commission)

ERNs Board of Member States presentation (Muriel Eliaszewicz, Ministry of Health, French representative at the ERN Board of Member States)

European Joint Programme on Rare Diseases (Daria Julkowska, French National Research Agency (ANR), France)

VASCERN Board Meeting

VASCERN Terms of Reference

Registry: the FAIR principle

Videos coming soon! 

The first day of our seminar was filmed! Videos, including presentations, are currently under edition. Full report & videos will be available in December!

Looking forward to VASCERN Days 2018! 

During this successful 2 days meeting, our Board decided that the VASCERN Days 2018 will take place on October 11-12, 2018! Location is to be confirmed!

Stay Tuned! 

Selection of pictures! Members can find all pictures on our ERN Collaborative Platform

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