The European Hematology Association (EHA)

About us

Patient Advocacy Committee

Current committee members

  • Derek Elston, United Kingdom (Chair)
  • Samantha Nier, Switzerland (Vice-chair)
  • Loris Brunetta, Italy (Vice-chair)

Members representing a Patient Advocacy Organization

Organization Member

Acute Leukaemia Advocates Network (ALAN)

Samantha Nier

CCI Europe

Anita Kienesberger

CLL Advocates Network (CLLAN)

Pierre Aumont

CML Advocates Network

Jan Geissler

European Federation of Associations of Patients with Haemochromatosis (EFAPH)

Dag Erling Stavik

European Haemophilia Consortium (EHC)

Maja Johanne Søndergaard Knudsen

European Organisation for Rare Diseases (EURORDIS)

Ariane Weinman

European Sickle Cell Federation

Miriam Santos Freire

ITP Support Association

Derek Elston

Lymphoma Coalition

Natacha Bolaños

MPN Advocates Network (MPN AN)

Werner Zinkand

International MDS Alliance

Jacqueline Dubow

Myeloma Patients Europe (MPE)

Katie Joyner

PNH Global Alliance

Maria Piggin

Thalassaemia International Federation (TIF)

Loris Brunetta

The EHA Patient Advocacy Committee at the EHA2023 Annual Congress.

Aim

In order to ensure patient voices are heard in EHA, in accordance with our mission and vision, various patient advocates have been brought together to form the EHA Patient Advocacy Committee (PAC). The establishment of this committee reflects the importance of establishing an ongoing, mutually beneficial dialogue between hematology professionals and patients.

Patients with a hematologic disorders (or their carers) in search of advice or support, or wishing to become active in patient advocacy, are welcome to contact us below or find our partners here.

Our priorities

  1. Offer a voice within EHA: ensure the voice of the patient community is heard and represented within EHA’s decision making, including at the board level.
  2. Coordinate EHA’s activities with patient organizations on guidelines, Specialized Working Group scientific meetings, etc.
  3. Ensure the voice of patients is heard as part of the EHA Annual Congress, through the joint EHA-Patient sessions and involvement in the wider scientific program.
  4. Support policy and advocacy through representation on the European Affairs Committee.

Tasks and responsibilities

  • Represent the position of the patient community, when decisions are taken in the context of EHA.
  • PAC representatives, i.e. patient advocates, are officially involved in the annual EHA Congress through:
    • Joint sessions (e.g. EHA-Patient Symposium)
    • Scientific Program via a seat on the SPC
    • PAC representatives, i.e. patient advocates, with a seat on the:
    • Research & Science
    • European Affairs
    • Policy and Advocacy
  • Perform joint meetings with the appropriate and relevant EHA committee on critical issues of concern to patients (disease-specific or general topics).

Composition

  • 1 Chair
  • 2 Vice Chairs
  • 11 Patient Advocacy Organizations as members  

Rotation

  • 3 years for Chair and Vice-chair
  • After rotating off as (vice) chair, these individuals can continue representing their organization in the PAC 

Join the EHA PAC

  • The organization must serve as a European umbrella for its member organizations and have member organizations in at least 10 European countries (or 5 in case of ultra-rare diseases).
  • The organization must represent the interests of patients with at least one hematological disease.
  • The organization must be registered as a non-profit organization, preferably in a European country.
  • The organization must have no statutory or structural government, political, or commercial affiliation and must not be funded in a way that compromises autonomous decision-making and governance.
  • The organization must be transparent about its structure, governance, and funding.
  • The organization must be willing to actively coordinate and collaborate with the other POs partnering with EHA, through the working group formed for this purpose by the POs (the ‘EHA PO Workgroup’).
  • If the organization is funded by commercial parties, said parties must adhere to the EFPIA Code of Conduct, and the PO should share related governance with EHA.
  • For more information, please contact community@ehaweb.org.

Connect with the EHA PAC

Find us on X, formerly Twitter: @EHAPatient

If you are a patient advocate and would like to join us at the EHA Congress, travel grant application will open soon.