Presentation of the sector

The Filières de Santé Maladies Rares “FSMR” were created following the Ministry of Health’s call for projects launched in the summer of 2013 (second national plan for rare diseases 2011-2016). The main aim of these FSMRs is to lead and coordinate actions between the various players involved in the care of rare diseases. This grouping enables numerous transversal actions between various pathologies that are very similar in terms of their management.

12 rare disease reference centers

“These include 12 coordinating sites, 28 constituent sites and 213 centers of expertise throughout France:

Reference Center for Autoimmune Cytopenias in Children (CEREVANCE, Pr N. Aladjidi)
Reference Center for Autoimmune Cytopenias in Adults (CeReCAI, Pr B. Godeau)
Center de référence des aplasies médullaires acquises et constitutionnelles (CR AM, Pr R. Peffault de Latour)
Histiocytosis Reference Center (CR H, Pr A. Tazi)
Reference Center for Thrombotic Microangiopathies (CNR MAT, Pr P. Coppo)
Mastocytosis Reference Center (CEREMAST, Pr O. Hermine)
Hereditary Immunodeficiency Reference Center (CEREDIH, Pr Moshous)
Reference Center for AL amyloidosis and other monoclonal immunoglobulin diseases (CR AL, Pr A. Jaccard)
Center de référence des angioedèmes à kinines (CREAK, Pr L. Bouillet)
Reference center for chronic neutropenia (CR NC, Dr J. Donadieu)
Castleman’s disease reference center (CRMdC, Pr E. Oksenhendler)
Center de référence des syndromes hyperéosinophiliques (CEREO, Dr JE. Kahn)

111 diagnostic and/or research laboratories

Working in collaboration with these CRMRs

14 patient associations

association Histiocytose France for Langerhansian histiocytosis
French Fanconi Disease Association (AFMF)
Primary Immunodeficiency Research, Information and Support Association (IRIS)
HPN France/Medullary Aplasia Association
the ADAMTS 13 association for thrombotic microangiopathies and thrombotic thrombocytopenic purpura
French Blackfan-Diamond Disease Association (AFMBD)
Association of Autoimmune Blood Diseases/Evans Syndrome (O’CYTO)
Association de Malades Atteints de Purpura Thrombopénique Immunologique (AMAPTI) (Association of patients suffering from immunological thrombocytopenic purpura)
French Amyloidosis Association (AFCA)
Association des Malades Souffrant d’Angio-oedèmes (AMSAO) (Association of patients suffering from angioedema)
Association for Information on Eosinophilic Diseases (APIMEo)
French Association for Research Initiatives on Mast Cells and Mastocytoses (AFIRMM)
French association of mastocytosis and SAMA patients (ASSOMAST)
L’association de Lutte contre les maladies de lymphohistiocytoses hémophagocytaires familiales (LHF Espoir)

In partnership with 8 learned societies

French Immunology Society (SFI)
French Hematology Society (SFH)
the French Society for Marrow Transplant and Cell Therapy (SFGM-TC)
Société Francophone de Néphrologie Dialyse et Transplantation (SFNDT) (French-speaking Society for Dialysis and Transplantation Nephrology)
the French National Society of Internal Medicine (SNFMI)
Pediatric Hematology and Immunology Society (SHIP)
Société de Pneumologie de Langue Française (SPLF – French lung society)
the French National Alliance for Health and Life Sciences (AVIESAN)

The network’s main missions are to improve care, boost research and inform professionals, patients and the general public about these rare diseases.

More information on the Ministry of Health website