The French national healthcare network for rare diseases (FSMR)

The French national healthcare network for rare diseases  (FSMR)

These are organised on the basis of a broad, consistent field of rare diseases that are similar in their signs and symptoms, their impact or their management or affect the same organ or the same system.    FSMR covers first and foremost the known rare diseases, but also probable rare diseases or syndromes that have not yet been confirmed.  

They comprise at least 3 CRMRs (in order to obtain a critical mass of patients, data and players that is sufficient to carry out research on the national level), their goal being to develop complementary action and share facilities between the CRMRs and with the other players involved in clinical management and research.

FSMR’s 3 assignments are:

  1. To optimise the management of patients affected by rare diseases.  
  2. to develop translational, clinical and organisational research 
  3. to develop teaching, training and information 

Today there are 23 FSMRs, amongst which 2 are coordinated by FHU players:

  • FILNEMUS : organised for the management of muscular disorders (myopathies), diseases of the neuromuscular junction, rare diseases of the peripheral nerves and infantile spinal amyotrophy.   
  • G2M department : organised to deal with hereditary metabolic diseases; i.e. genetic diseases affecting one of the body’s metabolic channels.