21 Jun 2012

The First Rare Diseases Plan 2004-2008

Illustration for article: The First Rare Diseases Plan 2004-2008
AFM-Téléthon and Alliance Maladies Rares played a key role in the adoption and development of the first Rare Disease Plan that was launched in 2004. This plan is now considered a public health model in Europe.


The "French model"

In 2004, France acknowledged rare diseases as a public health issue and adopted a Plan in order to face it. Two majors steps were taken.
  • The government certified Reference and Competence centers (hospital specialized teams for various rare diseases), that improve diagnosis and treatments for the patients.
  • The government increased its investments in research on these pathologies.

AFM-Téléthon’s role

AFM-Téléthon played a major role in the definition of this model. When he launched this plan in 2004, the Health minister Philippe Douste-Blazy said : "AFM-Téléthon helped all of us realize the importance of rare diseases. The association has become a key actor and partner for health professionals, researchers and the government."