The second French plan for rare diseases 2011-2014

Excerpt

Rare diseases are very complex and require comprehensive strategic planning. Because health and social services were not well adapted to the needs of those most vulnerable patients, a first National Plan for Rare Diseases has been implemented in France between 2009 and 2010, acknowledging the specificities of rare diseases. Information was developed for patients, professionals and the general public (in Orphanet database and Maladies Rares Info Service helpline), access to high quality care and treatment was facilitated with the designation of 131 centres of reference at National level, and 502 centres of competence at regional level, and the coordination and funding of research was improved, with a 200 million Euros budget overall. …