ERN-EuroBloodNet disease coverage involves more than 450 RHDs according to ORPHA classification encompassing oncological and non-oncological diseases, including rare anemias, rare coagulation disorders, polycythemia, and myeloid and lymphoid tumors. Rare hereditary hemochromatosis was also included following a request from experts and patient groups, covering adulthood for oncological and childhood and adulthood for non-oncological RHD. Disease coverage is divided into 6 medical areas, so called subnetworks.
Myeloid malignancies | See disease groups >> |
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Pierre Fenaux | Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis |
Uwe Platzbecker | Universitätsklinikum Carl Gustav Carus |
Sophie Wintrich | ePAG - MDS UK Patient Support Group (and MDS Alliance) |
Ananda Plate | ePAG - Myeloma Patients Europe |
Jacqueline Dubow | ePAG - MDS Alliance (international) & Connaître et Combattre les Myélodisplasies (CCM) |
Lymphoid malignancies | See disease groups >> |
Andreas Engert | Universitätsklinikum Köln |
Catherine Thieblemont | Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis |
Pierre Aumont | ePAG - Ensemble Leucémie Lymphomes Espoir (ELLyE) & Chronic Lymphocytic Leukemia Advocates Network (CLLAN) |
Jan Geissler | ePAG - Leukemia Patient Advocates Foundation |
Natacha Bolaños | ePAG - Lymphoma Coalition |
Rare Red blood cell defects | See disease groups >> |
Domenica Cappellini | Foundation IRCCS CA'Granda Ospedale Maggiore polyclinic - Milan |
Béatrice Gulbis | CUB-Hôpital Erasme |
Angelo Loris Brunetta | ePAG - Thalassaemia International Federation - Associazione Ligure Thalassemici Onlus |
Bone marrow failure and hematopoietic disorders | See disease groups >> |
Achille Iolascon | AOU Federico II - Naples |
Régis Peffault de Latour | Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis |
Maria Piggin | ePAG - Paroxysmal nocturnal hemoglobinuria (PNH) support |
Rare bleeding-coagulation disorders and related diseases | See disease groups >> |
Flora Peyvandi | Foundation IRCCS CA'Granda Ospedale Maggiore polyclinic - Milan |
Sophie Susen | CHU de Lille |
Baiba Ziemele | ePAG - European Haemophilia Consortium (EHC) |
Ioana Todorova-Yanakieva | ePAG - Bulgarian TTP Patient organization |
Hemochromatosis and other rare genetic disorders of iron metabolism and heme synthesis | See disease groups >> |
Graça Porto | Centro Hospitalar do Porto, EPE |
Dorine Swinkels | Radboud University Medical Center Nijmegen |
Dag Erling Stakvik | ePAG - European Federation of Associations of Patients with Haemochromatosis (EFAPH) |
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