Patient organizations

EHA greatly values the collaboration with patient organizations in a growing number of areas, from joint advocacy and a strong presence at the EHA Annual Congress – with a prominent place for the EHA-Patient Joint Symposium on policy and regulatory topics – to advice on scientific and educational activities.

EHA currently partners with 14 patient organizations, which are all European or international umbrella organizations with an exclusive or strong focus on hematological diseases. Alignment on issues of common concern and coordination of activities currently takes place via the EHA Patient Organizations Workgroup, which has two representatives on the EHA European Affairs Committee. A formal Patient Advocacy Committee (EHA PAC) will be established in the near future, ensuring that the voice of patients is heard throughout the organization.

Patients with a hematological disorder (or their carers) in search of advice or support, or wishing to become active in patient advocacy, are welcome to contact the relevant patient organization below.

Patient organizations collaborating with EHA

Acute leukemias

Acute Leukaemia Advocates Network (ALAN)

Chronic lymphocytic leukemia

CLL Advocates Network (CLLAN)

Chronic myeloid leukemia

CML Advocates Network

Hemochromatosis

European Federation of Associations of Patients with Haemochromatosis (EFAPH)

Hemophilia

European Haemophilia Consortium (EHC)

Immune thrombocytopenia

ITP Support Association

Lymphoma

Lymphoma Coalition (LC)

Myelodysplastic syndromes

International MDS Alliance

Myeloma

Myeloma Patients Europe (MPE)

Myeloproliferative neoplasms

MPN Advocates Network (MPN AN)

Paroxysmal nocturnal hemoglobinuria (PNH)

PNH Global Alliance

Rare diseases

EURORDIS - Rare Diseases Europe

Sickle cell disease

European Sickle Cell Federation

Thalassemia

Thalassaemia International Federation (TIF)

Application procedure

European/international umbrella organizations, representing primarily patients with hematological diseases who are interested in collaborating with EHA, are welcome to contact us (communication@ehaweb.org). Please provide the following information: name of the organization, name of its representative/contact person, website address, scope and size of the organization.