A. Person completing this application
Type of Centre*:
Health Care Provider (Hospital or medical centre)
Health Care Provider linked to University (University Hospital or medical centre)
C. National designation of Centres of Expertise
1. Is your centre already officially recognized as centre of expertise in RHD in your country?
If yes, Do you have an official written acknowledgement by national health authorities certifying your centre as Centre of expertise?
Do you have an official written acknowledgement certifying the endorsement of your centre to participate in a European Reference Network?
2. Select the sub-networks you are interested in participating (Multiple Choices)
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)
3. Select the field of action you are interested in participating (Multiple Choices)
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
Hereby, I confirm my commitment to apply as national node/member to the above mentioned ERN in Rare hematological diseases.