Patient Advisory Board Booklet

The Patient Advisory Board (PAB) is responsible for identifying and making suggestions regarding patients concerns and expectations on the remit of EURO-NMD.
The PAB will establish their own rules of procedures and Terms of Reference.
Find out about the PAB in the latest version of their booklet (July 2019)
Patient Advisory Board - Booklet
2019 Version of PAB booklet

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.

Chair of Patient Advisory Board

François Lamy.

AFM Téléthon

ePAG Members

Jean-Philippe Plançon

European Patient Organisation for Dysimmune and Inflammatory Neuropathies (EPODIN)

Evy Reviers

ALS Liga Belgium

Dimitrios Athanasiou

MDA Hellas

Marisol Montolio

Duchenne Parent Project Spain

Judit Varadine Csapo

Angyalszarnyak - Hungarian Muscle Dystrophy Association

Massimo Marra

CIDP Italia aps

Other Patient Representatives

Madelon Kroneman

Vereniging Spierziekten Nederland

Ria Broekgaarden

Vereniging Spierziekten Nederland