VASCERNdays2017: Read Our Full Report Now!

We are pleased to announce that the full report from VASCERN’s First Annual Seminar (#VASCERNdays2017) is now available! This comprehensive report details the two day seminar that took place in Paris, France on October 13-14, 2017 and that was attended by over 80 participants from all across Europe (Read our October article: VASCERNdays2017: Success of our First Annual Seminar!)

Read the Full Report here! The Executive Summary can be found on page 4 and the Conclusion on page 31.

We would like to thank, once again, all of the amazing participants & speakers who attended our annual event! We look forward to #VASCERNdays2018, which will take place on October 11-12, 2018 (Location TBC), and to continuing to work towards our goal of improving the lives of all patients with rare multisystemic vascular diseases in Europe.

First day plenary session videos are available on our YouTube Channel here

Presentations

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 (Marco Roos) 

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