Rare diseases health 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 facilitate and coordinate the actions being implemented by the various players involved in treating rare diseases. Thanks to this grouping, a large number of transverse actions will be put in place for treating a broad range of very similar pathologies.
Of the 23 networks identified in 2014, the network for rare immunohaematological diseases (MaRIH) brings together those involved in treating these pathologies:
- 12 centres of reference for rare diseases (CR), combined with 191 competence centres "CC"
Centre of reference for hemolytic anemia, autoimmune cytopenia & Evans syndrome in children (CEREVANCE, Y. Perel)
Centre of reference for autoimmune hemolytic anemia, Evans syndrome & idiopathic thrombocytopenic purpura in adults (CR AIC, Prof. B. Godeau)
Centre of reference for aplastic anemia (CR AA, Prof. R. Peffault de Latour)
Centre of reference for Langerhans cell histiocytosis (CR LH, Prof. A. Tazi)
Centre of reference for thrombotic microangiopathy (CR TMA, Prof. P. Coppo)
Centre of reference for mastocytosis (CEREMAST, O. Hermine)
Centre of reference for Primary Immunodeficiencies (CEREDIH, Pr Fischer)
Centre of Reference for AL amyloidosis and others immunoglobulin deposition diseases (Pr A. Jaccard)
Centre of Reference for bradikinin-mediated angoiedema (CREAK, Pr L. Bouillet)
Centre of Reference for chronic neutropenia (Dr J. Donadieu)
Centre of Reference for Castleman disease (CRMdC, Pr E. Oksenhendler)
Centre of Reference for hypereosinophilic syndrome (Dr J-E. Kahn)
- 101 laboratories for diagnosis and/or research working with these CR and EC
- 12 patient associations (Histiocytose France, AFMF, IRIS, HPN France/Aplasie médullaire, ADAMTS 13, AFMBD, O’CYTO, AMAPTI, AMSAO, French organization against amyloidosis, AFIRMM, APIMEO)
- 8 scientific societies (SFI, SFH, SHIP, SNFMI, SFGM-TC, SFNDT, SPLF, 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.
To learn more about rare disease national plans in France, centres of reference, centres of competence and networks >>