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 scientific interest group Institut des Maladies Rares.
Frédéric Revah is Chief Executive Officer of Genethon and President of YposKesi, one the largest industrial platforms for pharmaceutical production of gene- and cell-therapy products created in Nov. 2016 by AFM-Telethon and Bpifrance. Frédéric Revah has more than twenty five years’ experience in biotech and pharmaceutical industry, where he held several corporate managerial positions, as well as in academic research. He obtained his Ph.D. at the Institut Pasteur / Université Paris V, and graduated from the Ecole Polytechnique engineering school.
Before joining Genethon, Géraldine Honnet served as Head of Clinical Development in Infectious Diseases at Transgene, International Project Manager at Janssen-Cilag and Medical Director at Parexel International.
She has also worked at Hospital Saint-Louis as a Monitor for Clinical Studies and Investigator, for the ANRS (National Agency for AIDS Research) and the pharmaceutical industry.
Géraldine has graduated from Necker Children’s Hospital Medical School (Paris).
Alexandre Lemoalle has more than twenty years experience in the pharma industry. Before joining Genethon he had different functions in Finance within Sanofi and then as General Manager of subsidiaries and VP Mergers & Acquisitions for the group Sanofi. He then accompanied biotechs in their development and advised some Funds in their investments in Health sector. Alexandre is graduated from l’Institut Supérieur de Gestion (ISG).
Serge Braun is currently Scientific Director of AFM-Telethon (the French Muscular dystrophy Association acting in innovative therapies of rare diseases) and President of Genosafe (a CRO company dedicated to QC of biotherapeutic products).
He prior had 10 years of experience in the neuromuscular diseases field in the academic sector (Univ. Strasbourg France and USC Neuromuscular Center, Los Angeles) ; and 10 years in the biotechnology sector (Vice-President Research of Transgene SA, Gene therapy biotech company) were he developed his career in the field of gene therapy of genetic diseases and of immunotherapeutics.
He was co-founder of Neurofit (a contract research organization specialized in preclinical testings of both the central and the peripheral nervous system), Vice-President of Alsace BioValley (the tri-national initiative, non-profit making organization, for the development of a major biotech cluster in Europe).
He also serves as advisor for Venture Capital companies and bioclusters.
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.
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.
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.
Marie-Christine Ouillade, member of the Board of Directors of AFM, engineer and member of the Biomedicine Agency Advisory Council.
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 Le Pen, Professor of Health Economics at Université Paris – Dauphine – LEGOS.
Nathalie Triclin-Conseil, mobilized very early in the fight against rare diseases, founding and presiding for more than 10 years the Association of Patients of Fabry Disease (APMF). This strong experience allowed her to represent the patients in different instances. In 2006, she wanted to give a new dimension to her activism and joined the Alliance Rare Diseases. In 2012 as Vice-president but primarily since the 16th of October 2016 as President of the collective of more than 210 associations, she brings the voice of people affected by rare diseases in the monitoring committee of rare disease plans, France Assos Santé and l’Agence Française de Biomedicine.
Anne Galy heads an INSERM Research Group at Genethon, as well as a hematopoietic gene therapy translational program. She is qualified in pharmacy and received her doctorate in Immunology from Université de Lyon (1989). She worked in the USA biotech sector in Palo Alto (California) before becoming a Professor of Immunology at the School of Medicine and at the Karmanos Cancer Institute at the Wayne State University in Detroit, Michigan. In 2001, she joined INSERM as a Research Director. She currently runs INSERM Unit 951 at Genethon, which has links with Université d’Evry Val d’Essonne and the Ecole Pratique des Hautes Etudes. This research laboratory develops innovative treatments for diseases of the immune system and blood, and is particularly interested in mechanisms for immunization by viral gene transfer. Anne Galy has published more than 90 articles in international scientific journals.
Ana Buj Bello heads a research team at Genethon working on neuromuscular diseases, as well as a translational program investigating gene therapy for the treatment of myotubular myopathy. She received her degree in Medicine and Surgery from the University of Lleida, Spain, and a PhD in Neurosciences from the University of St Andrews (Great Britain). She also obtained a diploma in Myology from the University of Pierre et Marie Curie, France. Having done a post-doctorate at the Institut de Génétique et Biologie Moléculaire et Cellulaire (IGBMC), Illkirch, where she worked for several years on the pathophysiology of myotubular myopathy, she joined the INSERM in 2004 and has worked at Genethon since 2009. Ana Buj Bello has published about 40 articles in international scientific journals and received the 2015 Outstanding New Investigator Award from the American Society of Gene & Cell Therapy (ASGCT).
He received his Biology degree and Ph.D. In Biochemistry and Molecular Biology from the University of Ferrara, Italy. He also obtained a Master in Business Administration from Drexel University, United States. He spent over ten years in the United States at the Children’s Hospital of Philadelphia and University of Pennsylvania where he was involved in the early development of gene therapies based on the adeno-associated virus (AAV) vector platform. In his research, he characterized the mechanisms of immune tolerance induction mediated by AAV vector liver gene transfer. More recently he focused on the clinical development of AAV vector-based gene therapies for inherited diseases and on the study of immune responses directed against AAV vectors in human trials. He contributed to several first-in-human AAV gene transfer clinical trials for indications including hemophilia B, Leber’s Congenital Amaurosis, and lipoprotein lipase deficiency. He contributed to about 80 publications, including original research articles, reviews and commentaries, and book chapters.
Giuseppe Ronzitti heads a research group at Genethon which is working on the development of gene therapies for metabolic, inherited diseases. He received his Biotechnology degree from the University of Modena and his Ph.D. in Biochemistry from the University of Bologna. He spent five years in Genova at the Italian Institute of Technology where he was involved the characterization of the early mechanisms of neurodegeneration in genetic forms of Parkinson’s disease. In 2013, he joined the laboratory of Federico Mingozzi and his research focused on the clinical development of AAV vector-based gene therapies for Crigler-Najjar syndrome, Pompe disease and Glycogen storage disease type 3. Giuseppe contributed to 31 publications including research articles, review and commentaries. Importantly, over the last five years, he authored eight patents on the development of AAV-based gene therapy strategies.
Mario Amendola heads a research group at Genethon working on the development of novel gene transfer and genome editing tools and their application for the treatment of genetic disorders. He received his degree in Medical Biotechnology at University of Turin (Italy) and his PhD in Molecular Medicine at TIGET (San Raffaele Institute, Milan, Italy). After a postdoc as EMBO follow at the Netherlands Cancer Institute (Amsterdam), he joined Genethon in 2015 and INSERM in 2017. His research focused on the development of novel gene therapy and transfer tools, employing CRISPR genome editing for hematopoietic stem cells gene therapy and understanding chromatin dynamics, gene expression and microRNAs.
Mario contributed to 21 research articles in international scientific journals and received the Excellence in research Award from the American Society of Gene & Cell Therapy (ASGCT).