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 more in their 2020 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.

Details of our PAB members can be found below. Patient representation also extends further into our network in the form of additional patient representatives who form part of many of the different working groups that help make up our network. Further details can be found in the Patient Advisory Booklet which is available to download from this page.


Chair of Patient Advisory Board

François Lamy

AFM Téléthon
France

Members of Patient Advisory Board


Jean-Philippe Plançon

EPODIN
France

Evy Reviers

ALS Liga Belgium
Belgium

Dimitrios Athanasiou

MDA Hellas
Greece

Marisol Montolio

Duchenne Parent Project Spain
Spain

Massimo Marra

CIDP Italia ONLUS
Italy

Judit Varadine Csapo

Angyalszarnyak - Hungarian Muscle Dystrophy Association
Hungary

Patrizia Garzena

CIDP Italia ONLUS
Italy

Madelon Kroneman

Spierziekten Nederland
Netherlands

Michela Onali

Gli Equilibristi
Italy