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Our Board of Directors

Our Board of Directors is composed of representatives of each of the 5 founding members, 8 qualified personalities and 1 representative elected by researchers. It defines the strategy and the actions of the Foundation and oversees their successful implementation. 

It votes the annual budget and approves the accounts of each financial year. It meets at least 3 times a year.

Our Board is chaired by Prof. Jean-Louis Mandel.


The AFM-Telethon represented by Mrs. Laurence Tiennot-Herment, President
 Inserm represented by Professor Yves Lévy, Chairman and Chief Executive Officer
 Rare Disease Alliance represented by Nathalie Triclin, President
 The Conference of the Directors General of the Regional and University Hospital Centers, represented by Mr. Jean-Pierre Dewitte, General Director of the University Hospital of Poitiers and, by delegation, by Mr. Philippe Vigouroux, General Director of the University Hospital of Bordeaux

 The Conference of University Presidents, represented by Mr Gilles Roussel, President of Paris-Est Marne-la-Vallée University and, by delegation, by Professor Manuel Tunon de Lara, President of the University of Bordeaux


Pr Jean-Louis Mandel – President
Holder of the Chair “Human Genetics” at the College de France from 2003 to (August) 2016, he is a doctor of medicine and doctor of science. 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 (CNRS Unit / INSERM Unit/ University of Strasbourg) 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..

Professor Michel Goossens – Treasurer
PU-PH of Molecular Genetics at the Henri Mondor Hospital in Créteil, very recently retired, he was responsible for a research team on the cellular and molecular bases of hereditary diseases (unit 955 of the Institut Henri-Mondor of Créteil).

Pr Jean-Jacques Cassiman
Graduated from the Catholic University of Louvain, he carried out a genetics research work for 5 years at Stanford. He directed the Leuven Human Genetics Center. Author of more than 400 publications, he has coordinated the Eurogentest network of excellence aimed at harmonizing genetic diagnosis practices in Europe.

François – Noël Gilly
Visceral surgeon, a specialist in rare tumors of the peritoneum, led the first gene therapy trial in digestive cancers. He is Dean of the Faculty of Medicine of Lyon Sud, and he is engaged in an ethical reflection associated with the practice of modern medicine, being at the origin of several books on this topic.

Emmanuel Jacquemin
Pediatric Hospital  Professor at University-Hospital Centre (CHU) of Bicêtre Hospital, 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
Associate Professor, Economics Department at ESSEC, she holds the Chair of Therapeutic Innovation at ESSEC.

Dr. Karim Ould-Kaci
Scientific Director of the VYV Group (merger of MGEN, Ystia and Harmonie Mutuelle), he is also director of the MGEN Foundation for Public Health. He holds a doctorate in medicine, specializing in social medicine and public health, a master’s degree in public law, specializing in health law and policy, the CNAM-Pasteur master of public health specializing in the organization and management of health systems, and the Executive MBA of ESCP Europe.

Dr. Guy Lenaers: Holder
Cell biologist, Director of CNRS research 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). His substitute is Professor Stéphane Bézieau, Professor of Universities, Hospital Practitioner at the Faculty of Medicine of Nantes.