The Foundation’s Board of Directors defines its strategy and actions and ensures their successful implementation. It votes the annual budget and approves the accounts for the financial year. It meets twice a year. The board is composed of 14 members representing all the players in research and care: 5 founding members, 8 qualified personalities and 1 elected representative of professors and researchers.
Outraged by the neuromuscular disease that struck her son, Laurence Tiennot-Herment became involved in the fight against rare diseases 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 since 1958: overcoming neuromuscular diseases. The emergency of the disease, still incurable until now, 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.
Holder of the Chair “Human Genetics” at the College de France from 2003 to 2016, he is a medicine and science doctor. In 1991, he created a diagnostic laboratory for genetic diseases at the Strasbourg University Hospital, which he managed until September 2015. He was director of the Strasbourg Institute of Genetics and Molecular and Cell Biology from 2002 to 2009. He is a member of the French National Academy of Sciences and corresponding member of the French National Academy of Medicine, and laureate of several important national and international awards for his research on the mechanisms of neurological genetic diseases and neuromusculardisorders.
M.D. PhD. of Molecular Genetics at the Henri Mondor Hospital in Créteil, now retired, he was responsible for a research team on the cellular and molecular bases of hereditary diseases.
He is a medical doctor expert in pediatrics and immunology. Founding member of the Institute of Genetic Diseases « Imagine » which he directed from 2009 to 2016. Alain Fischer was also professor of pediatrics at Paris-Descartes University. From 1996 to 2012, he headed the pediatric immunology and hematology department at the Necker-Enfants Malades hospital. Alain Fischer was a professor at the Collège de France, holder of the chair of experimental medicine. Alain Fischer’s work concerns genetic diseases of the immune system and their treatment with a strong interest for gene therapy. Alain Fischer is a member of the French Academy of Sciences and the Academy of Medicine, and was appointed by the government to lead the Covid-19 vaccine strategy in December 2020.
Graduated from the Catholic University of Louvain, he worked for 5 years on genetics at Stanford University and then directed the Leuven Human Genetics Center. Author of more than 400 publications, he coordinated the Eurogentest network of excellence that aimed at harmonizing genetic diagnosis practices in Europe.
He is a professor of pediatrics at Bicêtre University-Hospital and head of Hepatic Pediatric Hepatology and Transplantation Department. He is the coordinator of a reference center for rare diseases of the child’s liver. He is in addition medical director of the pediatric liver transplantation program. Professor Jacquemin heads the “Genetic Cholestases” team within the Inserm unit “Cellular Interactions and Hepatic Physiopathology” (Unit UMR-S 1174). He is at the origin of a partnership with the CTRS laboratory for the development of Orphacol cholic acid, in the treatment of two rare pediatric liver genetic diseases (European AMM obtained in 2013, Prix Galien France 2014, Prix Galien International 2016 ).
She is an Associate Professor at the Economics Department at ESSEC. She holds the Chair of Therapeutic Innovation at ESSEC.
Scientific Director of the VYV Group (a groupement of French health mutuals), he is also director of the MGEN Foundation for Public Health. He holds a doctorate in medicine focusing on social medicine and public health, a master’s degree in public law with a specific focus on health law and policy, a the master of public health at CNAM-Pasteur and an Executive MBA on management of health.
Doctor of medicine specialized in Nephrology and graduated from the ESSEC school. He was an intern at Paris Hospitals and then head of the clinical assistants. He also worked part-time as an hospital practitioner at the Armand Trousseau Children’s Hospital in Paris. He taught biomedical research as an Associate Professor at Sorbonne University. Pr Vasmant also worked for industry where it contributed to the clinical and post-marketing development of several drugs. Among other responsibilities, he recently assumed the interim management of Genopole Entreprise and then joined the network of nephrologists in Ile de France as coordinating doctor. He is a national corresponding member of the Academy of Pharmacy.
He is a cell biologist, research director in Angers. He is one of the leading French specialists in mitochondrial medicine and holds the Chair of Excellence PREMMI (Pole of Research and Teaching in Mitochondrial Medicine). Dr Lenaers is heading the MitoLab team dedicated to the understanding and treatment of mitochondrial inherited and common diseases, with emphasis on pathologies affecting the optic nerve.
He obtained his Pharm D. in 1990 in Nantes and became in and became in 2010 Head of the Medical Genetics. He is now a Department University Professor, Hospital Practitioner at the Faculty of Medicine of Nantes. Since 2018, he is President of the French Federation of Human Genetics.