ABOUT US

The Board of Directors

The Foundation's Board of Directors defines its strategy and actions and oversees their execution.

It votes on the annual budget and approves the accounts for the year. It meets twice a year. It is composed of 14 administrators representing all the actors of research and care: 5 founding members, 8 qualified personalities and 1 elected representative of teachers, researchers and teacher-researchers.

Here are the representatives of the 5 founding members:

Mrs Laurence TIENNOT-HERMENT
AFM-Telethon
Mrs. Elli CHATZOPOULOU
Inserm
Dr Emilie GARRIDO-PRADALIE
Conference of University Hospital Chief Executive Officers
Ms. Hélène BERRUE-GAILLARD
Rare Diseases Alliance
Pr Didier LACOMBE
Conference of University Presidents
  • 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.

Director of Health Research at the Assistance-Publique Hôpitaux de Marseille (AP-HM) since June 2018.

After 8 years in the pharmaceutical industry, in the field of HIV and anti-proteases, Hélène Berrue-Gaillard joined the P.H.C. pharmacy in 2005 with the main responsibility for the application of new regulations and logistics.
Hélène Berrue-Gaillard is the founding president of AMFE, Association Maladies Foie Enfants. She was for many years vice-president of the Alliance Maladies Rares before becoming president in June 2022. She is close to the concerns of patients with a recognized militant activity.

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.

  • 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.

Dr. Emilie Garrido-Pradalié

Conference of University Hospital Chief Executive Officers

Director of Health Research at the Assistance-Publique Hôpitaux de Marseille (AP-HM) since June 2018.

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

Mrs. Marie-Pierre BICHET

Rare Diseases Alliance

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.

Pr Didier LACOMBE

Conference of University Presidents

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.

6 qualified persons

Pr Jean-Louis MANDEL - President

PU-PH of Molecular Genetics at the Henri Mondor Hospital in Créteil, recently retired, he was in charge of a research team on the cellular and molecular bases of hereditary diseases (unit 955 of the Henri-Mondor Institute in Créteil).Holder of the "Human Genetics" chair at the Collège de France from 2003 to (August) 2016, he is a doctor of medicine and a doctor of science. He created in 1991 a laboratory for the diagnosis of genetic diseases at the University Hospital of Strasbourg, which he directed until September 2015. He was director of the Institute of Genetics and Molecular and Cellular Biology of Strasbourg (CNRS/INSERM/University of Strasbourg Unit) from 2002 to 2009. He is a member of the French Academy of Sciences and a corresponding member of the French National Academy of Medicine, and has received several important national and international awards for his research on the mechanisms of neurological and neuromuscular genetic diseases.

Pr Alain FISCHER

Doctor, specialist in pediatrics and immunology. A founding member of the "Imagine" Institute of Genetic Diseases, which he directed from 2009 to 2016, located on the same site, Alain Fischer was a professor of pediatrics at the University of Paris-Descartes. From 1996 to 2012, he directed the pediatric immunology and hematology department at the Necker-Enfants Malades Hospital. Alain Fischer was a professor at the Collège de France, holding the chair of experimental medicine. Alain Fischer's work focuses on genetic diseases of the immune system and their treatment, notably by gene therapy. Alain Fischer is a member of the French Academy of Sciences and the French Academy of Medicine and has been appointed by the government to lead the vaccine strategy in December 2020.

Pr Emmanuel JACQUEMIN

PU-PH of Pediatrics at the Bicêtre University Hospital, Head of the Pediatric Hepatology and Hepatic Transplantation Department, he is coordinator of a reference center for rare diseases of the child's liver and medical director of the pediatric liver transplantation program. Prof. Jacquemin leads the "Genetic Cholestasis" team within the Inserm unit "Cellular Interactions and Hepatic Physiopathology" (UMRS 1174 unit). 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 genetic liver diseases (European MA obtained in 2013, Prix Galien France 2014, Prix Galien International 2016).

Pr Catherine BOILEAU

Catherine Boileau is a French pharmacist-biologist specializing in genetics, director of various Inserm units, and winner of the 2018 Lefoulon-Delalande Foundation Grand Scientific Prize for co-discovering the role of the PCSK9 gene in cholesterol metabolism.

Pr Eric HACHULLA

Éric Hachulla is a university professor and hospital practitioner in the internal medicine department of the Claude-Huriez Hospital, Lille University Hospital.

Pr Daniel VASMANT - Treasurer

Doctor of Medicine specialized in Nephrology and graduate of ESSEC. He was appointed intern at the Paris Hospitals, then assistant chief of clinic and finally part-time PH at the Armand Trousseau Children's Hospital in Paris. He taught biomedical research as an associate professor at the UPMC. In the industry he contributed to the clinical and post-marketing development of several drugs. In the high civil service, at the DGCIS, which became the DGE (Direction Générale de Entreprises), he was appointed head of the health, biotechnology and agri-food industries office, in charge of the pharmaceutical industry, small and medium-sized biotech companies and medical technology sectors within the Ministry of the Economy and Finance. He has been a member of the ANR where he was responsible for the "Translational Health Research" and "Technologies for Health" (TecSan) programs within the Biology and Health Department. More recently, he was interim director of Genopole Entreprise and then joined the Ile de France nephrologists' network as coordinating physician. He is a national correspondent member of the Academy of Pharmacy.

Elected representatives of teachers, researchers, teacher-researchers

Dr. Guy LENAERS : Full member

Cellular biologist, Director of Research at the CNRS in Angers, he is one of the leading French specialists in mitochondrial medicine and holds the PREMMI Chair of Excellence (Pôle de Recherche et d'Enseignement en Médecine Mitochondriale).

Prof. Stéphane BEZIEAU : Substitute

Professor of Universities, Hospital Practitioner at the Faculty of Medicine of Nantes.