Yann Le Cam
CEO, Rare Disease Europe (EURORDIS)

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. 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 a member of the DG Sanco Task Force on Rare Diseases and other European Commission working groups. He has three daughters, the eldest of whom has cystic fibrosis.

The EMEA is now called European Medicines Agency and the portfolio of pharmaceuticals is being transfered from DG Enterprise to DG Health & Consumers.

This decision is part of a significant reshuffle of responsibilities assigned to each Designated Commissionner in the Barosso II European College of Commissionners. For this decision to be implemented the new Commissionners need first to be approved by the European Parliament in January / February. This transfer is an important change. All [...]

The Commission’s Decision to create the EU Committee of Experts on Rare Diseases should be published between Mid and End November 2009.

The creation of this Committee is one of the well expected concrete implementing measures of the adoption of the Commission Communication on Rare Diseases in November 2008. The publication of the decision was already expected since July 2009, however other priorities like the EU strategy to address the challenges of the H1N1 flu epidemic [...]

Rare diseases at the forefront to address the healthcare challenges of the future

The European Union and its Member States are faced with the challenge of an emerging field in medicine: personalised medicine. Therapeutic interventions, and in particular medicinal products, are increasingly intended for well targeted and smaller patient populations.
These interventions are usually intended for the prevention, diagnosis, treatment, cure or long term management of severe, debilitating, life-threatening [...]