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21 Jun 2012

The Second Rare Diseases Plan 2011-2014

Illustration for article: The Second Rare Diseases Plan 2011-2014
The patients associations that took part in the evaluation of the First National Rare Disease Plan, closed in 2008, campaigned for a second plan to be launched. It was finally launched on February 28th, 2011, during the International Rare Disease Day.

 

The first Rare Disease Plan generated major advances for the 3 million French people concerned by a rare disease that is often serious, progressive, invalidating and lethal. Thanks to this plan, France is considered as a model of public health policy in Europe and in the world. This is why everyone was looking forward to the second plan.
 
Although this second plan is in continuity with the first one, it is still very imprecise, especially in terms of financial support and the necessary methods for its implementation.
 

The main issues are…

  • the development of therapies 
  • the orphan drugs question
  • the organization of the patients’ support
  • the implementation of this plan on a local level
  • the number of clinical research assistants.
 
All these aspects are not taken into consideration completely enough.
 

Interesting steps

The Second plan also presents important initiatives : organization of the health sectors, creating a research foundation for rare disease, acknowledging the legitimitacy of the Platform and its components.