Patient Advisory Board : The Voice of Patients with Rare Neuromuscular Diseases

Main Author – Francois Lamy

François Lamy is the Chair of the EURO-NMD Patient Advisory Board.
François is the father of a 10 year-old boy with Duchenne Muscular Dystrophy. He is a board member of the AFM-Téléthon since 2012, and currently serves as its Vice-President in charge of research. He also serves on the board of directors of the Center for the Study of Stem Cells (I-Stem CECS) and the Rare Disease Information Services (MRIS).

This poster was presented as part of the EURO-NMD 1st Annual Meeting - Freiburg, Germany in November, 2017.

Contact Francois Lamy about this poster at

Additional authors

Broekgaarden Ria, Dutch Patient Society of Neuromuscular Diseases;
Bungay Nic, Muscular Dystrophy UK;
Kroneman Madelon, Spierziekten Nederland, Neuromuscular Association Netherlands;
Montolio Marisol, Duchenne Parent Project Spain;
Plançon Jean-Philippe, French Association against Peripheral Neuropathies;
Reviers Evy, ALS Liga Belgium;
Santantonio Piero, MITOCON ONLUS;
Schwersenz Inge, Deutsche Gesellschaft für Muskelkranke;
Varadine Csapo Judit, Angyalszarnyak Hungarian Muscle Dystrophy Association

What is the Patient Advisory Board?

The EURO-NMD Patient Advisory Board (PAB) aims to ensure true and equitable representation of the patient voice in the European Reference Network.

It strives to create a bridge between EURO-NMD and the rare neuromuscular patient community so as to ensure that the needs of patients are included in the strategic and operational delivery of the ERN, and to ultimately improve access to high quality diagnosis, care and treatment.

To this end, patient representatives are also nominated for each of the EURO-NMD Specialist Groups and Advisory Boards.

What does the PAB do?

GOVERNANCE: Representation in all boards and groups
GUIDELINES: In line with patient needs
RESEARCH: Formulate priorities
EVALUATION: Feedback on quality indicators and recommendations
ETHICS: From data management to handling complaints
TRAINING AND DISSEMINATION: Develop educational materials and disseminate information
INFORMATION: Inform patients and professionals
TRANSPARENCY: Improve transparency of information

Who are the PAB members?

The EURO-NMD Patient Advisory Board comprises 10 members from 8 countries:
• Chair: François Lamy (AFM-Téléthon)
• Ria Broekgaarden (Dutch Patient Society of Neuromuscular Diseases)
• Nic Bungay (Muscular Dystrophy UK)
• Madelon Kroneman (Spierziekten Nederland, Neuromuscular Association Netherlands)
• Marisol Montolio (Duchenne Parent Project Spain)
• Jean-Philippe Plançon (French Association against Peripheral Neuropathies)
• Evy Reviers (ALS Liga Belgium)
• Piero Santantonio (MITOCON ONLUS)
• Inge Schwersenz (Deutsche Gesellschaft für Muskelkranke)
• Judit Varadine Csapo (Angyalszarnyak Hungarian Muscle Dystrophy Association)

The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit