Yann Le Cam | Chief Executive Officer

Yann Le Cam, Chief Executive Officer, EURORDIS

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 has cystic fibrosis. Yann is one of the founders of EURORDIS in 1996-1997 and its Chief Executive Officer since 2001. He has participated in the revision and adoption of European regulations having an impact on rare disease patients’ life, including the EU Regulation on Orphan Drugs, December 1999.He was one of the first patient representatives appointed to the Committee for Orphan Medicinal Products (COMP) at the European Drug Agency (EMA) where he served for 9 years and was its Vice Chairman 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 Experts Group on Rare Diseases  In November 2013, Yann Le Cam was elected Chair of the Therapies Scientific Committee of the IRDIRC – International Rare Diseases Research Consortium.


World Orphan Drug Congress USA 2018 - Conference Day One @ 13:30

Lunch keynote address: Breakthrough therapies call for breakthrough processes to ensure sustainable patient access

World Orphan Drug Congress USA 2018 - Conference Day Two @ 15:35

Scaling up rare disease patient engagement in Europe

  • The EURORDIS new structured approach on patients' engagement in research, drug development and life cycle and healthcare
  • Creating value for patients and working through partnership to create value to all stakeholders

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