EHA News

 

EuroBloodNet aims for better care for patients with rare blood disorders

[Vilnius, March 10, 2017] Patients suffering from rare blood disorders will benefit from networks of excellence across the European Member States.

At the third conference on European Reference Networks (ERNs) yesterday in Vilnius, Lithuania, EuroBloodNet was officially awarded as one of the recently approved ERNs.

 

ERNs is an initiative of the European Commission and consist of networks of healthcare providers and centers of excellence in Europe aimed at improving quality, safety, and access to highly specialised healthcare. Through these networks healthcare providers have access to a much larger knowledge pool and patients have better changes to receive the best treatment.

EuroBloodNet, the ERN on rare hematological diseases, results from joint efforts of the European Hematology Asssociation (EHA), and the European Network for Rare Congenital Anemias (ENERCA). It is coordinated by Prof. Pierre Fenaux from the Hopital Saint Louis , Paris, together with Prof. Béatrice Gulbis from the University Hospital Erasme , Brussels. The network brings together 66 highly specialized hospital centres with expertise on malignant and non-malignant rare hematological diseases.

Patient involvement is key in ERNs. For EuroBloodNet the hematology patient community elected five representatives: Amanda Bok (European Haemophilia Consortium), Angelo Loris Brunetta (Associazione Ligure Thalassemici Onlus), Jan Geissler (Leukemia Patient Advocates Foundation), Ananda Plate (Myeloma Patients Europe) and Sophie Wintrich (MDS UK Patient Support Group) successfully ensured that the patient voice is fully represented in the ERN Board and sub-clinical committees – a great achievement and a milestone in increasing the role of patients in clinical care as it evolves in Europe.

After their first meeting in January 2017 in Paris, EuroBloodNet will gather again at the congress of the European Hematology Association, from June 22-25, in Madrid, Spain. 

End of press release