Subnetworks

Subnetworks

Hematological diseases involve a large group of disorders resulting from quantitative or qualitative abnormalities of blood cells, lymphoid organs and coagulation factors, generally divided in about 6 groups of oncological or non-oncological diseases. With the possible exception of diffuse B cell large cell lymphoma, classical myeloma and chronic lymphocytic leukemia, hematological diseases are rare ORPHA97992, including rare anemias ORPHA 108997, rare coagulation disorders ORPHA 98429, polycythemia ORPHA 98427, and myeloid and lymphoid tumors ORPHA 68347. Rare hereditary hemochromatosis ORPHA220489 was also included in our network following a request from well-established patient groups and experts.

Coverage of all Rare Hematological Diseases is assured through their inclusion in two main thematic groups, oncological diseases led by Prof. Pierre Fenaux and non-oncological diseases led by Prof. Béatrice Gulbis. Oncological diseases include two subthematic areas, and non-oncological diseases include four subthematic areas.


Subnetworkds Coordinators

Rare Red blood cell defects
Béatrice Gulbis CUB-Hôpital Erasme
Domenica Cappellini Foundation IRCCS CA'Granda Ospedale Maggiore polyclinic - Milan
Angelo Loris Brunetta ePAG - Thalassemia International Federation
Bone marrow failure (BMF) and hematopoietic disorders
Achille Iolascon AOU Federico II - Naples
Reggis Peffault Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis
Maria Piggin ePAG - PNH support
Rare bleeding-coagulation disorders and related diseases
Michael Markis Sheffield Teaching Hospitals NHS Foundation Trust
Flora Peyvandi Foundation IRCCS CA'Granda Ospedale Maggiore polyclinic - Milan
Amanda Bok ePAG - European Haemophilia Consortium (EHC)
Hemochromatosis and other rare genetic disorders of iron metabolism and heme synthesis
Graça Porto Centro Hospitalar do Porto, EPE
Dorine Swinkels Radboud University Medical Center Nijmegen
Myeloid malignancies
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)
Lymphoid malignancies
Andreas Engert Universitätsklinikum Köln
Catherine Thieblemont Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis
Pierre Aumont ePAG - SILLC