Patient Advocates

EURORDIS, the European umbrella organisation of patient organisations and a non-profit alliance of 798 rare disease patient organisations, has established a European Patient Advocacy Group (ePAG) for each ERN disease grouping. Patient organisations can become ePAG member organisations and patients can become ePAG representatives (2016 and onwards).

The ERN-RND ePAG comprises the following members:

Members Organisation
Cathalijne van Doorne euro-Ataxia and European Federation of Neurological Associations
Mary Kearney Friedreich’s Ataxia Research Alliance Ireland (FARA)
Tsveta Schyns-Liharska European Network for Research on Alternating Hemiplegia, ENRAH
Astri Arnesen European Huntington Association
Robert Scholten Apeldoorn Dystonia Europe
Lori Renna Linton Euro-HSP
Amanda Rose raredementiasupport.org UK patient group
John McFarlane European Polio Union