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Our Scientific Advisory Board and its “Ad-hoc” specialized Committees

The French Foundation for Rare Diseases is supported in its activities by a Scientific Advisory Board composed of renowned French and international clinicians and scientists, who define the broad scientific orientation and modalities of implementation of the annual program to support research. It is appointed by the Board of Directors for a period of four years, renewable by half under conditions specified by the rules of procedure.


Doctor Nathalie Cartier-Lacave is President of the Scientific Council of the Rare Diseases Foundation, until April 5, 2017. 
Find her video testimonial, by clicking here


Professor Catherine Boileau was President from 2012 to March 2016, replaced by Professor Jean-Louis Mandel until April 2017.
Doctor Nathalie Cartier-Lacave was elected President of the Scientific Council of the Rare Diseases Foundation, April 5, 2017. 

Mr Michel Cerbelle, is a guest of the Council representing the Rare Disease Alliance.

The Scientific Council is composed as follows (in alphabetical order):

– Prof. Jacques Beckmann, Genetics and Clinical Bioinformatics, Swiss Institute of Bioinformatics, University of Lausanne (Switzerland)
– Prof. Alexis Brice, Neurogenetics, Pitié-Salpétrière Hospital, Pierre and Marie Curie University, Paris
– Doc.Nathalie Cartier-Lacave, Neurosciences, Saint Vincent de Paul Hospital, Paris Descartes University
– Patrick Edery, Pediatric Clinical Genetics, Mother and Child Hospital, University of Lyon
– Prof. Eric Hachulla, Internal Medicine, Lille University Hospital, University of Lille 2
– Prof. Albert Hagège, Cardiology, Georges Pompidou European Hospital, Paris Descartes University
– Prof. Katherine High, Translational Medicine, University of Pennsylvania (USA)
– Pr Marc Humbert, Pneumologie, Hôpital Bicêtre, Université Paris-Sud

– Pr Marie-Laure Kottler, Department of Genetics, University Hospital of Caen
– Prof. Pierre Lévy, Health Economics, University Paris Dauphine
– Doc. Jocelyn Laporte, Genetics, Institute of Genetics and Molecular and Cell Biology, University of Strasbourg
– Doc. Sandrine Marlin, Surdités génétiques, Hôpital Necker, Paris
– Prof. Gert Matthijs, Genetics, University Hospital Leuven (Belgium)
– Doc. Anne-Marie Masquelier, Consultant in Strategy and Health Business Development Masquelier Conseil
– Doc. Catherine Nguyen, AVIESAN ITMO Génétique Génomique et Bioinformatique, Paris
– Doc. Tuan Nguyen, Médecine régénérative, hépatologie, Goliver Therapeutics
– Prof. Yann Péréon, Neuromuscular, University Hospital of Nantes, University of Nantes
– Prof. Anne-Catherine Perroy, Pharmaceutical Law and Economics, University of Lille 2
– Prof Yves Pirson, Nephrology, University Clinics Saint Luc, Leuven (Belgium)
– Professor Pierre Ronco, Nephrology, Tenon Hospital, Pierre and Marie Curie University, Paris
– Prof. Damien Sanlaville, Genetics, Mother and Child Hospital, University of Lyon
– Prof. Alain Taieb, Dermatology, Hospitals Saint André and Pellegrin-children, University of Bordeaux
– Prof. Maité Tauber, Pediatrics, Toulouse University Hospital, University of Toulouse
– Doc. Laurent Villard, Genetics, University Hospital of La Timone, Aix Marseille University, Marseille