OUR MISSIONS Established on March 1, 2014, the MCGRE health sector aims to lead and coordinate the players involved in rare genetic diseases of the red blood cell and erythropoiesis. The actions and missions of the MCGRE sector revolve around four axes: IMPROVING OVERALL PATIENT CARE The sector encourages and implements actions and projects in key areas such as therapeutic patient education, child / adult transition, medico-social care or even emergency care. It aims to improve the homogeneity of care throughout France. THE COORDINATION OF FUNDAMENTAL, TRANSLATIONAL AND CLINICAL RESEARCH The sector provides support for projects and research work within its network of rare disease expert centers, in particular by disseminating information on projects and their progress, organizing thematic conferences or monitoring calls for projects. . The sector is also working on the homogenization of databases, their interoperability and their connection with the National Bank of Rare Disease Data (BNDMR). THE DEVELOPMENT OF EDUCATION, TRAINING AND INFORMATION Several tools have been put in place by the sector to inform health professionals, patients and their entourage but also to contribute to better visibility of rare red blood cell pathologies: information brochures, website, social networks , newsletter, magazine, events and conferences, specific training etc. COORDINATION AT EUROPEAN AND INTERNATIONAL LEVEL European Reference Networks (ERNs) bring together experts from across Europe to improve the management of complex and rare diseases requiring highly specialized care as well as a concentration of knowledge and resources. The MCGRE sector participates in the ERN EuroBloodNet dedicated to rare hematological diseases. Presentation document of the European reference networks Presentation document in English of the European reference networks IN THE SPOTLIGHT 24/11/21 AAP FMR / AFM Telethon: “Proof of innovative therapeutic concepts” Letter of intent in English before 12/22/21 before 5 p.m. (Paris time) Drepa31: Aging with sickle cell anemia 11/19/21 5th MCGRE Association Day - November 26, 2026 11/17/21 HAS - Call for user applications 10/26/21 New inter-sector booklet ALL THE NEWS AGENDA 03 DEC 2021 SICKLE CELL DISEASE AND EDUCATION 06-08 DEC 2021 28th PEDIADOL DAYS - CHILD'S PAIN 06-07 JAN 2022 Francophone Days of Blood Diseases 01-04 FEB 2022 Human and Medical Genetics Conference ALL EVENTS Legal Notice Sitemap Axeptio consents