François Lamy

François Lamy is the father of a 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 Téléthon. François Lamy also serves on the Board of Directors of the Center for the Study of Stem Cells (I-Stem CECS) and GenoTher (French biocluster dedicated to Gene Therapy).

Contact me at pab@ern-euro-nmd.eu

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 the father of a 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 Téléthon. François Lamy also serves on the Board of Directors of the Center for the Study of Stem Cells (I-Stem CECS) and GenoTher (French biocluster dedicated to Gene 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. “