Rare Disease Blogs

Christel is the mother of a 33-year-old daughter born with a rare disease which was finally diagnosed when her daughter was 16 years old. Since then, Christel has been fighting relentlessly for better diagnosis and access to care for people living with rare diseases across Europe. She was one of the founders of Prader-Willi France and of the French National Alliance for Rare Diseases. She was elected director of EURORDIS in 2000 and is currently its General Secretary. On behalf of EURORDIS, she was instrumental in developing the first National Plan for Rare Diseases in France (2005-2008), the Communication of the European Commission “Rare Diseases, Europe’s Challenge” (2008) and the Recommendations of the Council for Rare Diseases (2009). Today she represents EURORDIS at the Rare Diseases Task Force of the European Commission. She is an advisor in the EUROPLAN project.