European Reference Network in Rare Hematological Diseases

Member's application form for participating in the EC Call for European Reference Networks

Thematic field: Rare Hematological diseases
ERN Acronym: ERN EuroBloodNet
Coordinator: Prof. Pierre Fenaux – Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis (Paris)
Co-coordinator: Prof. Béatrice Gulbis - CUB-Hôpital Erasme (Brussels)
Scientific Director: Dr. Maria del Mar Mañú Pereira - Josep Carreras Leukaemia Research Institute (Barcelona)
IT and Dissemination manager: Victoria Gutierrez Valle - Josep Carreras Leukaemia Research Institute (Barcelona)

A. Person completing this application

B. Centre

Type of Centre*:

C. National designation of Centres of Expertise

Rare anaemias due to RBC defects (Haemoglobinopathies, red cell enzymopathies and membrane disorders)
Rare anaemias due to haematopoietic defects (Congenital dyserythropoietic anaemia, hereditary aplasic anaemias, erythroblastopaenia, paroxysmal nocturnal haemoglobinuria, myelodysplastic syndromes)
Rare hereditary haemochromatosis and iron metabolism defects (HFE / non HFE rare haemochromatosis, rare anaemias due iron metabolism defects, erythropoietic porphyries)
Rare bleeding disorders (Hemophilia, von Willebrand Disease, allied rare bleeding disorders)
Rare erythrocytosis and thrombocytosis (Familial  erythrocytosis due to abnormal hypoxia sensing,  haemoglobinopathies with high affinity for oxygen, erythrocyte 2,3-biphosphoglycerate mutase deficiency)
Rare thrombophilic diseases (Genetic thombotic disorders and other)
Rare thrombotic microangiopathies (Thrombotic Thrombocytopaemic Purpura (TTP) and haemolytic uremic syndrome (HUS))
Rare lymphoid malignancies (ALL in adults, chronic lymphoproliferative disorders, lymphomas)
Rare myeloid malignancies(AML in adults, myelodysplastic syndrome, myeloproliferative neoplasms)
Registry: European epidemiological surveillance and mapping of services: European inventory of experts, centres, facilities available and number of patients
Training: Education and training (Continuous medical education), European training courses, e-learning, European passport for hematologist
Telemedicine: Tele-expertise for complex cases (clinical management and diagnosis)
Guidelines: Guidelines development and implementation. Assessment of European best practices
Prevention: Screening and prevention programs, implementation assessment
Clinical trials: New therapies
Research: Drug-able targets identification, gene therapy, pathophysiological mechanism
Cross border health: Cross-border health care, mobility of patients, reimbursement of services

D. Laboratory Requirements

E. Patients Treated By Your Centre

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