François Lamy

François Lamy is the father of a 11 year-old boy with Duchenne Muscular Dystrophy. He has been elected as a member of the Board of Directors of the AFM-Téléthon since 2012, and currently serves as its Vice-President in charge of research. François Lamy also serves on the Board of Directors of the Center for the Study of Stem Cells (I-Stem CECS) and YposKesi (AFM-Telethon co-funded Biotech acting in Gene and Cell Therapy).


Newsletter Interview

François took part in an interview in which he was asked about his role within the network and his expectations. Below is a transcript of the interview which has previously featured in the EURO-NMD monthly newsletter .

a. Tell us a little bit about yourself
“I am the father of an 11 year-old boy with Duchenne Muscular Dystrophy. I have been elected as a member of the Board of Directors of the AFM-Téléthon since 2012, and currently serve as its Vice-President in charge of research. I also serve on the Board of Directors of the Center for the Study of Stem Cells (I-Stem CECS) and YposKesi (AFM-Telethon co-funded Biotech acting in Gene and Cell Therapy).“

b. What is your role in EURO-NMD?
“My role, as all Patient Advisory Board members, is to coordinate the action of patient representatives within the Network and ensure that patients’ voice and point of view are taken into account in its activities. As patients, it is also our task to make proposals to the network of health care providers to improve patient care in Europe.”

c. What are your expectations of the Network?
“EURO-NMD is a wonderful tool to disseminate best practices of care throughout the continent. It has a key role to play in the context of inequalities of access to drugs and care between European countries. European legislation and position on this matter goes in the right direction (cross border care, cross European project funding, etc….) but its implementation lays on the joint effort of clinicians and patients. The value of the ERN comes from our dedication to reach that goal. “

François's Network Involvement

François is involved in these different areas of the network...
PAB - Chair Member of Network Executive Committee

Organisation

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 ec.europa.eu/health/ern