EURORDIS 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:
Cathalijne van Doorne
euro-Ataxia and European Federation of Neurological Associations
Friedreich’s Ataxia Research Alliance Ireland (FARA)
European Network for Research on Alternating Hemiplegia, ENRAH