Patient organizations
EHA collaborates with patient organizations on a wide range of activities, including:
- Advocating on issues that affect hematology patients
- Developing advice on scientific and educational activities
We also work with these organizations to co-organize patient-focused events for our annual EHA Congress. These events include the EHA-Patient Joint Symposium—an important forum for discussing policy and regulatory issues.
EHA Patient Advocacy Committee
To ensure we work collaboratively and can align on issues of common concern, we have an EHA Patient Advocacy Committee (EHA PAC).
This full committee, which was established in 2022:
- Ensures that patients' voices are heard throughout our organization
- Encourages mutually beneficial dialogue between hematology professionals and patients
EHA PAC has:
- Two representatives on the EHA European Affairs Committee (EHA EAC)
- An advisor on the EHA Scientific Program Committee (EHA SPC)
Patient organizations collaborating with EHA
We currently have formal partnerships with 14 patient organizations. All of these bodies are European or international umbrella organizations with an exclusive or strong focus on hematological diseases.
If you have a blood disorder, or you care for someone who does, these organizations can provide advice or support. They can also help if you're interested in becoming a patient advocate.
Acute leukemias
Acute Leukaemia Advocates Network (ALAN)
Chronic lymphocytic leukemia
Chronic myeloid leukemia
Hemochromatosis
European Federation of Associations of Patients with Haemochromatosis (EFAPH)
Hemophilia
European Haemophilia Consortium (EHC)
Immune thrombocytopenia
Lymphoma
Myelodysplastic syndromes
Myeloma
Myeloproliferative neoplasms
MPN Advocates Network (MPN AN)
Paroxysmal nocturnal hemoglobinuria (PNH)
Rare diseases
EURORDIS - Rare Diseases Europe
Sickle cell disease
European Sickle Cell Federation
Thalassemia
Thalassaemia International Federation (TIF)
If you want to collaborate with us
We're keen to hear from you if:
- You represent a European or international umbrella organization
- The exclusive or primary focus of your organization's work is patients with hematological diseases
To ask about a potential collaboration, send the following details to communication@ehaweb.org:
- The name of your organization
- Your name, or the name of a relevant contact
- Your organization's website address
- Information on the scope and size of your organization
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