The Board of Directors

• President of AFM-Telethon since 2003
• President of the Myology Institute Association since 2005
• President of Genethon since 2009
• President of the Institute of Biotherapies for Rare Diseases since 2012
• Director of GIP Genopole since 2003
• Director of the Foundation For Rare Diseases since 2012
• Director of the Imagine Foundation since 2007
• Director of INSERM
• Manager of AFM Productions since 2004

Outraged by the neuromuscular disease that struck her son, Laurence Tiennot-Herment became involved in the fight against this disease, which is progressing inexorably, day after day, and to spare future generations from this scourge. Deeply attached to the founding values of the AFM, Refuse-Resist-Cure, Laurence Tiennot-Herment pursues, with the support of patients and their families, the objective that the Association has set since 1958: to defeat neuromuscular diseases. The urgency of the disease, still incurable to this day, and the fragility of the Telethon must be the basis of a strong militancy and a state of mind of permanent conquerors, in order to advance more rapidly in the missions of the Association, while developing a strategy of general interest that can benefit all those concerned by rare diseases. Boldness, anticipation, innovation and the desire to break new ground have been - and must remain - the driving forces behind the Association. 

Elli Chatzopoulou was appointed head of Inserm's Department of Partnerships and External Relations on September 28, 2018. She succeeds Valérie Mazeau-Woynart, who held this position since late 2014. She has a doctorate in neuroscience and was previously Higher Education Research Advisor to the President of the Ile-de-France Regional Council.

President of the Alliance for Rare Diseases, Marie-Pierre Bichet has never ceased to work against rare diseases, to defend access to diagnosis for all and treatment for all, and to improve the quality of life of those who are ill.
Marie-Pierre Bichet co-founded the French Association for Fanconi's Disease (AFMF) 30 years ago following the diagnosis of this rare disease in one of her children. Convinced of the power of action of people with the disease, she obtained a Master's degree in Patient Therapeutic Education at the Pierre and Marie Curie University (UMPC) in 2014.

Marie-Pierre Bichet has also served as president of Maladies Rares Info Services, the national information and helpline for all rare diseases, since September 2019.

She joined the foundation to pursue her commitment to rare diseases and to put her skills at the service of the foundation.

Professor Didier Lacombe is responsible for teaching medical genetics at the University of Bordeaux and a hospital practitioner, head of the medical genetics department at the Bordeaux University Hospital since January 2000. This physician is also director of the laboratory "Rare Diseases: Genetics and Metabolism" (MRGM), which was created by INSERM in 2016 (INSERM U1211). It was in 1995 that Didier Lacombe, then head of the pediatrics department at the Bordeaux University Hospital, created the medical genetics department. Since then, this discipline has continued to develop, particularly in the field of rare diseases, an important issue for the Bordeaux University Hospital. Didier Lacombe was also president of the French Federation of Human Genetics and president of section 47 (genetics, hematology, oncology, immunology) of the National University Council (CNU). He is the director of the CRDN Nouvelle aquitaine, in charge of neonatal screening in the region. Didier Lacombe was elected to the National Academy of Medicine as a corresponding member in the 1st division, medicine and medical specialties, in 2013.

She joined the foundation to pursue her commitment to rare diseases and to put her skills at the service of the foundation.