Yann Le Cam

  • Chief Executive Officer


Yann Le Cam is a patient advocate who has dedicated 25 years of professional and personal commitment to health and medical research non-governmental organisations 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. Yann is one of the founders of EURORDIS in 1997 and the organisation’s Chief Executive Officer since 2001.

He has participated in the revision and adoption of European regulations that impact the lives of rare disease patients, including the EU Regulation on orphan medicinal products.

He was one of the first patient representatives appointed to the Committee for Orphan Medicinal Products (COMP) at the European Medicines Agency (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.

Yann Le Cam is also a member of and immediate past Chair of the Therapies Scientific Committee of IRDIRC (the International Rare Diseases Research Consortium).

In June 2016, Yann Le Cam was elected to the Management Board of the European Medicines Agency.   

Telephone: +33 1 56 53 52 11
Email: yann.lecam@eurordis.org

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases