Contribution ERN: Involvement In the Board of ERN-EuroBloodNet
In parallel to the establishment of European Reference Networks (ERNs), EURORDIS - Rare Diseases Europe has initiated the creation of European Patient Advocacy Group (ePAG) for each ERN to bring together the patient organisations whose rare diseases are covered by a specific ERN such as EuroBloodNet.
Patients 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. Their role could be invested in several domains:
Patients Associations Involved:
Leukemia Patient Advocates Foundation
Thalassaemia International Federation
Associazione Ligure Thalassemici Onlus
European Haemophilia Consortium
Latvian Alliance of Rare Diseases
European Federation of Associations of Patients with Haemochromatosis (EFAPH)