Yann Le Cam
Position: Chief Executive Officer
Organisation: EURORDIS – Rare Diseases Europe
Area of work: Ethical Legal Social Issues
Address: Plateforme Maladies Rares, 99 rue Didot
, Paris, 75014, France
Yann Le Cam is a patients' association advocate who has dedicated 20 years of professional and personal commitment to health and medical research nongovernmental organisations in France, Europe and the United States in the fields of cancer, HIV/AIDS and rare diseases.
Yann served as Director General of the AIDES Fédération Nationale from 1992 to 1998. He served as a Special Advisor to the French Neuromuscular Association (AFM) from 1998 and founded the Alliance Maladies Rares, a national umbrella organisation of over 150 patient associations in France. Yann was one of the founding members of the European Organisation for Rare Diseases in 1997 and contributed to the adoption of the European Regulation on Orphan Drugs in December 1999. He serves as vice chair of the Board of Directors of the International Alliance of Patients Organisations (IAPO) in London.
In 2001, he joined Eurordis as Chief Executive Officer. He is one of three patient representatives appointed to the Committee for Orphan Medicinal Products (COMP) at the European Drug Agency (EMEA) and served as its Vice Chairman from 2000 to 2006. He is Co-Chair of the COMP Working Group of Interested Parties at the EMEA. He is a member of the DG Sanco Task Force on Rare Diseases and other European Commission working groups. In June 2001, Yann was appointed to the Management Board and Executive Board of the French National Agency for Health Accreditation and Evaluation (ANAES) until 2005 and now serves on the Commission for Quality of Medical Information at the French High Health Authority in Paris.
Yann trained at the Institut Superior de Gestion (MBA, 1984) and at the Hautes Etudes de Commerces - HEC (Senior Executive MBA, 2000). He has three daughters, the eldest of whom has cystic fibrosis.