ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases)

Hospital & Health Care - Paris, Île-de-France, France

ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases) Employees
Mariangela Pellegrini

ERN-EuroBloodNet Educational & Patients Program manager

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ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases) Details

EuroBloodNet, the ERN in Rare Hematological Diseases (RHD) was officially approved by the European Commission (EC) on December 2016 and started its activity 1st March 2017.EuroBloodNet results from a joint effort of the European Hematology Association (EHA), the European Network on Rare and Congenital Anaemias (ENERCA), the European hematology patient organisations represented in both the EURORDIS European Patient Advocacy Groups (ePAGS) and the EHA Patient Organisations Workgroup.EuroBloodNet encompasses oncological and non-oncological rare hematological diseases including rare anemias, rare coagulation disorders, polycythemia, and myeloid and lymphoid tumors. Rare hereditary hemochromatosis was also included in our network following a request from well-established patient groups and experts.Gathering 66 highly skilled and multidisciplinary healthcare teams in 15 Member States, and advanced specialized medical equipment and infrastructures, EuroBloodNet will facilitate concentration of resources for the design, validation and implementation of high-quality and cost-effective services aimed at facing the challenges of RHD. Involvement from the outset of patient associations will contribute to patient empowerment and keeping EuroBloodNet's patient-centred approach.EuroBloodNet, with the experience gained thanks to EHA and ENERCA, will seek to guarantee that European citizens affected by a RHD benefit from the same level of highly specialised care, thereby improving their overall quality of life, and reducing inequalities across Europe on access to health care independent from the patient's country of origin or country of professional practice.

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Employees: 5
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Location: Paris, Île-de-France, France
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