Yann Le Cam was one of the founders of EURORDIS when it was created in 1997 and is the organization’s Chief Executive Officer since 2001. In June 2016, Le Cam was also elected to the Management Board of the European Medicines Agency (EMA). He is also a member of and immediate past Chair of the Therapies Scientific Committee of IRDIRC (the International Rare Diseases Research Consortium). He was one of the first patient representatives appointed to the Committee for Orphan Medicinal Products (COMP) at the EMA, where he served for 9 years and was its vice-chair for 6 years. He served on the Management Board and Executive Committee of the French HTA agency for 5 years, on the DIA Advisory Committee Europe for 3 years. He was the Vice Chairman of the EU Committee of Experts on Rare Diseases (EUCERD) from 2011 to July 2013, and he is nominated on the current Commission Expert Group on Rare Diseases. He is a patient advocate who has dedicated 25 years of professional and personal commitment to health and medical research non-governmental organizations in France, Europe and the United States in the fields of cancer, HIV/AIDS and rare diseases. He has three daughters, the eldest of whom is living with cystic fibrosis.