Patients undoubtedly constitute one of the main cornerstones of the European Reference Networks. The involvement of patients’ organizations in the Board of EuroBloodNet has been assured from the beginning in order to guarantee their pivotal role within the network and keep EuroBloodNet patients’ centred approach.
EURORDIS – Rare Diseases Europe has played an active advocacy role over the last ten years in favour of European Reference Networks (ERNs). It has established European Patient Advocacy Groups – ePAGs – for each ERN and is ensuring a transversal coordination as well as providing specific training programmes.
In May 2016, the rare disease patient community in the field of hematology, including hematological malignancies, elected six ePAGs’ representatives ensuring that patient’s voice is fully represented in the EuroBloodNet Board and sub-clinical committees and increasing the role of patients in clinical care in Europe.
More ePAGs’ representatives are joining as the network is developing, they are selected by their peers and the Coordinating team.