ePAGs POs affiliation

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

MDS Alliance

Latvia Hemophilia Society

European Haemophilia Consortium

Latvian Alliance of Rare Diseases

Myeloma Patients Europe (MPE)

PNH support

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