BOARD OF DIRECTORS
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.
THE 5 FOUNDING MEMBERS
AFM-Téléthon
- President of the AFM-Téléthon since 2003
- President of the Association Institute of Myology since 2005
- President of Généthon since 2009
- President of the Institute of Biotherapies for Rare Diseases since 2012
- Administrator of GIP Genopole since 2003
- Administrator of the Rare Diseases Foundation since 2012
- Administrator of the Imagine Foundation since 2007
- Administrator 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 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.
Inserm
Appointed by the Council of Ministers on November 26, 2018, Dr. Gilles Bloch became President and CEO of Inserm on January 2, 2019. Polytechnician, physician and researcher, specialist in medical imaging, Dr. Gilles Bloch spent part of his career at the French Atomic Energy Commission (1989 – 2002) before taking over the management of the National Research Agency when it was created (Feb 2005 – May 2006). He was then appointed Director General of Research and Innovation at the Ministry of Higher Education and Research (2006 – 2009) before joining the CEA as Director of Life Sciences. Since 2015, he is President of the Université Paris-Saclay.
The Conference of Managing Directors of Regional and University Hospitals
Marc Penaud began his career as deputy director of the University Hospitals of Strasbourg from 1996 to 2003, then successively held the positions of director of finance and information system at the Cannes hospital center, director of the projects division of the University Hospitals of Strasbourg, medical affairs and research, and then as director of the finance, information system and quality division until 2009, again in Strasbourg. From 2009 to 2016, he was deputy director general of the Grenoble University Hospital, before becoming director general of the Mulhouse and South Alsace Regional Hospital Group in January 2016. From July 2018 to December 2021, he was the director of the counter hospital of Toulouse, and since December 2021 he is Inspector General of Social Affairs at the Ministry of Solidarity and Health.
Alliance Maladies Rares
President of the Alliance for Rare Diseases, Marie-Pierre Bichet always work against rare diseases, to defend access to diagnosis and treatment for all, and to improve the quality of life of those affected.
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 kids. 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 in 2014.
Marie-Pierre Bichet is also, since September 2019, the president of Maladies Rares Info Services, the national information and helping line on all rare diseases.
Conférence des présidents d’université
Didier Lacombe is responsible of medical genetics teaching at the University of Bordeaux and a hospital practitioner, head of the medical genetics department at Bordeaux University Hospital since January 2000. This physician is also director of the laboratory « Rare Diseases: Genetics and Metabolism » created by INSERM in 2016. Didier Lacombe created medical genetics department at the Bordeaux University Hospital in 1995. 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. He is in charge of neonatal screening in the Nouvelle aquitaine 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.
8 QUALIFIED PERSONALITIES
- Pr Jean-Louis MANDEL – President
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.
- Pr Michel GOOSSENS – Treasurer
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.
- Pr Alain Fischer
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.
- Pr Jean-Jacques Cassiman
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.
- Pr Emmanuel JACQUEMIN
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 ).
- Pr Karine LAMIRAUD
She is an Associate Professor at the Economics Department at ESSEC. She holds the Chair of Therapeutic Innovation at ESSEC.
- Dr Karim OULD-KACI
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.
- Pr Daniel VASMANT
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.
1 elected representative of the teachers,
researchers and teaching researchers
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Dr Guy LENAERS : Full member
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.
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Pr Stéphane BEZIEAU : Alternate member
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.