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.
Patient organisations have a key role to play in healthcare. They help patients and their carers to understand their condition, to find out about how and where to get access to the best treatment and care, to learn how to live with the disease, its symptoms and side effects, and help them to navigate their healthcare systems to achieve best possible outcomes.
Patient organisations serve as a key contact point for patients and carers through local support groups, websites and social media. In addition, patient advocacy organisations work with policy makers, healthcare institutions, clinicians, researchers and industry to make sure all health policy and research delivers to patients' needs and priorities. To do all this, patient organisations operate on a regional, national and international level today.
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.
The ePAG Advocates are nominated to represent their disease area in the ERN EuroBloodNet as well as the interests of the wider patient community affected by rare hematological diseases. They are the voice of the patients in the EuroBloodNet Board of Network. EURORDIS - Rare Diseases Europe ensures a transversal coordination as well as provides specific training programmes.
European Haemophilia Consortium (EHC)
Thalassaemia International Federation
PNH Support Group
European Federation of Associations of Patients with Haemochromatosis (EFAPH)
Leukemia Patient Advocates Foundation
Association de Soutien et d'Information à la Leucémie Lymphoïde Chronique et la maladie de Waldenström & Chronic Lymphocytic Leukemia Advocates Network
Myeloma Patients Europe
MDS UK Patient Support Group and MDS Alliance