EHA Patient Advocacy Committee

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) has been established in June 2022, ensuring that the voice of patients is heard throughout the organization.

Our Chair, Zack Pemberton-Whiteley has been appointed as vice-chair of the committee.

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 Leukemia Advocates Network (ALAN)

Chronic Lymphocytic Leukemia CLL Advocates Network (CLLAN)

Chronic Myeloid Leukemia CML Advocates Network

European Federation of Associations of Patients with Haemochromatosis (EFAPH)

Hemophilia European Haemophilia Consortium (EHC)

Rare Diseases EURORDIS – Rare Diseases Europe

Immune Thrombocytopenia ITP Support Association

Lymphoma Lymphoma Coalition (LC)

Myeloproliferative Neoplasms MPN Advocates Network (MPN AN)

Myelodysplastic Syndromes International MDS Alliance

Myeloma Myeloma Patients Europe (MPE)

Paroxysmal nocturnal hemoglobinuria (PNH) PNH Global Alliance

Thalassemia Thalassaemia International Federation (TIF)