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European Patient Advocacy organisations

European Patient Advocacy organisations

Hematology patient advocacy organisations with members in Europe

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)
http://acuteleuk.org/membership/members/

Chronic Lymphocytic Leukemia: CLL Advocates Network
(6 patient organisations in Europe)
http://www.clladvocates.net/about-us/

Chronic Myeloid Leukemia: CML Advocates Network
(51 patient organisations in Europe)
http://www.cmladvocates.net/members

Haemochromatosis: European Federation of Associations of Patients with Haemochromatosis (EFAPH)
(21 patient organisations in Europe)
http://efaph.eu/

Haemophilia: European Haemophilia Consortium (EHC)
(45 patient organisations in Europe)
https://www.ehc.eu/about-ehc/membership/

Lymphoma: Lymphoma Coalition (LC)
(34 patient organisations in Europe)
http://www.lymphomacoalition.org/members-area/our-members

Multiple Myeloma: Myeloma Patients Europe (MPE)
(40 member organisations in Europe)
http://www.mpeurope.org/about-mpe/our-members/

Myelodysplastic Syndromes: International MDS Alliance
(15 patient organisations in Europe)
https://www.mds-alliance.org/member-organizations/

Myeloproliferative Neoplasms: MPN Advocates Network
(12 patient organisations in Europe)
http://www.mpn-advocates.net/members/

Thalassaemia: Thalassaemia International Federation (TIF)
(24 patient organisations in Europe)
http://thalassaemia.org.cy/about/tif/members/

Waldenström's Macroglobulinemia: EWMnetwork
(14 patient organisations in Europe)
http://www.waldenstrom.info/

Hematology patient advocacy organisations not associated with a pan-European umbrella

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
https://www.itpsupport.org.uk/

Paroxysmal Nocturnal Haemoglobinuria (PNH): PNH Support UK
http://www.pnhuk.org/

The Aplastic Anaemia Trust UK
http://www.theaat.org.uk

Euro Blood Net