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:
- Ensuring patient-centred care and respect for patients' rights and choices
- Ensure transparency in quality of care, safety standards, clinical outcomes and treatment options.
- Ensure that ethical aspects for patients are properly taken into account in balancing patient and clinical needs.
- Contribute to the development of information for patients on health policies, good clinical practice, treatment pathways and dissemination of guidelines
- Contributing to the planning, monitoring and evaluation of ERN initiatives
Patients Associations Involved:
CML Advocates Network
Leukemia Patient Advocates Foundation
Thalassaemia International Federation
Associazione Ligure Thalassemici Onlus
MDS UK Patient Support Group
Latvia Hemophilia Society
European Haemophilia Consortium
Latvian Alliance of Rare Diseases
Myeloma Patients Europe (MPE)
Association de Soutien et d'Information à la Leucémie Lymphoïde Chronique et la maladie de Waldenström
European Federation of Associations of Patients with Haemochromatosis (EFAPH)
EURORDIS - Rare Disease Europe