The Rare Diseases Healthcare Networks (RDHN) were created following a call for proposals from the French Ministry of Health in the summer of 2013 (second national rare disease plan). The main objective of these RDHN is to animate and coordinate actions between the different actors involved in the management of rare diseases. This grouping allows numerous transversal actions between various pathologies that are very similar in their management.
Among the 23 RDHN identified in 2014, the rare immuno-hematological diseases (MaRIH) healthcare network gathers the actors involved in the management of these diseases and thus brings together :
12 centres of reference for rare diseases (CR), combined with 213 competence centres “CC”
- Reference center for hemolytic anemia, auto-immune cytopenia & Evans syndrome in children (CEREVANCE, Y. Perel)
- Reference center for adult auto-immune cytopenia (CR AIC, Prof. B. Godeau)
- Reference center for aplastic anemia (CR AA, Prof. R. Peffault de Latour)
- Reference center for histiocytosis (CR LH, Prof. A. Tazi)
- Reference center for thrombotic microangiopathy (CR TMA, Prof. P. Coppo)
- Reference center for mastocytosis (CEREMAST, O. Hermine)
- Reference center for primary Immunodeficiencies (CEREDIH, Pr Moshous)
- Reference center for AL amyloidosis and others immunoglobulin deposition diseases (Pr A. Jaccard)
- Reference center for angioedema (CREAK, Pr L. Bouillet)
- Reference center for chronic neutropenia (Dr J. Donadieu)
- Reference center for Castleman disease (CRMdC, Pr E. Oksenhendler)
- Reference center for hypereosinophilic syndrome (Dr J-E. Kahn)
101 laboratories for diagnosis and/or research working with these CR and EC
13 patient associations
- The histiocytosis France association (Histiocytoses France)
- The French association for Fanconi anemia (AFMF)
- The patient association for primary immunodeficiencies (IRIS)
- The Paroxysmal nocturnal hemoglobinuria France – aplastic anemia (HPN France – Aplasie médullaire)
- The patients association for thrombotic microangiopathy (ADAMTS 13)
- The french association for Diamond-Blackfan anemia (AFMBD)
- The association for auto-immune cytopenia – Evans syndrome (O’CYTO)
- The association of patients affected by Immune ThrombocytoPenia (AMAPTI)
- The French Association against Amylose (AFCA)
- The patient association of hereditary angioedema (AMSAO)
- The patient association for Eosinophilic Diseases (APIMEo)
- The French Association for Research Initiatives on Mastocytes and Mastocytoses (AFIRMM)
- The French patients association with mastocytosis and SAMA
8 scientific societies
- The French Society of Immunology (SFI)
- The French Society of Hematology (SFH)
- The French Society for Bone Marrow Transplantation and Cell Therapy (SFGM-TC)
- The French Society for Nephrology Dialysis and Transplantation (SFNDT)
- The French National Society of Internal Medicine (SNFMI)
- The Society of Pediatric Hematology and Immunology (SHIP)
- The Society of Pneumology of the French Language (SPLF)
- The National Alliance for Life Sciences and Healthcare (AVIESAN)
The main missions of this network are to improve the care, the research and to inform the professionals, the patients and the general public on these rare diseases.