The Patient Advisory Board (PAB) comprises of the European Patient Advocacy Group (ePAG) which is made up of 7 patient organisations elected through a process put in place by EURORDIS for patient organisations in general, as well as invited umbrella patient organisations which will encourage and empower patients to participate in our activities, strategy development and research.

The network is fully committed to delivering a patient-centric approach ensuring patients are represented at every stage of developement. Patients will also be empowered though formal roles in the project via the Patient Advisory Board and representation on the other key boards and specialist groups. This will ensure the high level involvement of patients in the decision making, as experts in their diseases, which will manifest through contribution to early project work on guidelines, outcome measures and advances in diagnostics, which are important to rare disease patients.


 

Patient Advisory Board Members

 

François Lamy (AFM Téléthon, France)
Jean-Philippe Plançon (French Association against Peripheral Neuropathies: Guillain
Barre syndrome-Chronic inflammatory demyelinating polyneuropathy, France)
Massimo Marra (CIDP Italia ONLUS, Italy)
Evy Reviers (ALS Liga Belgium)
Judit Varadine Csapo (Angyalszarnyak Hungarian Muscle Dystrophy Association)
Marisol Montolio (Duchenne Parent Project Spain)
Piero Santantonio (MITOCON ONLUS, Italy)
Other Patient Representatives:
Inge Schwersenz (DGM; Deutsche Gesellschaft für Muskelkranke;Germany)
Ria Broekgaarden (VSN; Dutch Patient Society of Neuromuscular Diseases)
Nick Bungay (Muscular Dystrophy UK)