Board of Directors

President
Laurence Tiennot-Herment, President of AFM and the Institut de Myologie. An accountant by profession, Laurence Tiennot-Herment found herself launched into the world of disease prevention and the various associations working in this field in 1989 as a result of her son’s illness. Having previously worked for the Telethon and AFM in Seine-Maritime, her native region, she joined AFM Board of Directors in 1997. She was elected first Secretary and then Vice-President, before taking the position of President of AFM in 2003. Since 2005, she has also been President of the Institut de Myologie, and of Genethon since 2009. In addition to her responsibilities within AFM and its “operational branches”, Laurence Tiennot-Herment is Director of the public interest group Genopole, and of the Imagine Foundation, as well as sitting on the management committee of the Maladies Rares Foundation.

Vice-President
Pierre-Etienne Bost, Executive Director of the Académie des Technologies, Member of the Conseil Supérieur de la Recherche et de la Technologie, former Director of Research in the pharmaceutical industry and at the Institut Pasteur.He is also President of Genatlantic.

Marc Bouillet 3 Treasurer
Marc Bouillet, Consultant, Former Director of Government Affairs and Health Economics at Johnson & Johnson Medical Devices & Diagnostics, former Executive Officer of AFM.He is also treasurer of the Institut de Myologie.

Secretary
Marie-Christine Ouillade, member of the Board of Directors of AFM, engineer and member of the Biomedicine Agency Advisory Council.

Board Members

Claude Le Pen, Professor of Health Economics at Université Paris – Dauphine – LEGOS.

Jean-Pierre Lamorte, engineer in the field of telecommunications, has been engaged in the battle of the association against the illness of his son in 1993, at the time of diagnosis. After participating in the creation of the Delegation of the AFM-Telethon for the Hauts de Seine, the creation of the Interest Group Duchenne Becker, he joined the Board of Directors of AFM-Telethon in 2005 as Secretary and Treasurer then Vice President in 2008, will also sit on the Board of the Institute of Myology in 2007/2008 and the bord of Genethon since 2007.

From 2009 to 2014, he held the position of Director for the Patient and Family support.


Claude-Allary_Web Claude Allary, is a consultant and executive coach with Life Sciences industrial and financial companies. After 14 years’ experience with the International Pharmaceutical Industry, followed by 21 years in technology and strategy consulting, he now devotes his time to innovative companies and Patient Associations, and participates to on-going debates about prospective and strategy via articles and conferences.

Alain Donnart Upon retirement from civil service in 2006, Alain Donnart joined the AMR (Rare Disease Alliance) as President of Lesch-Nyhan Action which is one of 40 associations created by the AMR. He has been strongly committed to working in rare diseases following his  grand-nephew being diagnosed with Lesch-Nyhan.He became Vice-Chairman of the AMR in 2011, and was elected its Chairman in April 2013.