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.
Eleven pan-European umbrella networks cover a wide range of hematological diseases. Their membership comprises of more than 260 national and regional patient organisations that support patients and carers, engage in health policy and engage in research. Please go to the member areas of these organisations to find a patient organisation in your country.
Acute Leukemia Advocates Network
(8 patient organisations in Europe)
Chronic Lymphocytic Leukemia: CLL Advocates Network
(6 patient organisations in Europe)
Chronic Myeloid Leukemia: CML Advocates Network
(51 patient organisations in Europe)
Haemochromatosis: European Federation of Associations of Patients with Haemochromatosis (EFAPH)
(21 patient organisations in Europe)
Haemophilia: European Haemophilia Consortium (EHC)
(45 patient organisations in Europe)
Lymphoma: Lymphoma Coalition (LC)
(34 patient organisations in Europe)
Multiple Myeloma: Myeloma Patients Europe (MPE)
(40 member organisations in Europe)
Myelodysplastic Syndromes: International MDS Alliance
(15 patient organisations in Europe)
Myeloproliferative Neoplasms: MPN Advocates Network
(12 patient organisations in Europe)
Thalassaemia: Thalassaemia International Federation (TIF)
(24 patient organisations in Europe)
Waldenström's Macroglobulinemia: EWMnetwork
(14 patient organisations in Europe)
The following patient organisations are not yet affiliated or represented by a pan-European or international umbrella organisation, but are providing crucial support to patients on the national level. They may even be of help to find similar patient organisations in the same disease area in other countries:
Immune Thrombocytopenia: ITP Support Association UK
Paroxysmal Nocturnal Haemoglobinuria (PNH): PNH Support UK
The Aplastic Anaemia Trust UK
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) voted and co-opted seven ePAG representatives who are ensuring that the 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.