Contact us   |  


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.

Subnetworks Coordinators

Myeloid malignancies See disease groups >>
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)

Euro Blood Net