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.
In order to guarantee the expertise of the members joining ERN-EuroBloodNet, specific criteria was defined for each of the 6 subnetworks, including minimum number of patients for some specific disease groups and highly specialized criteria for the diagnosis and treatment of such disorders.