Patient Advocacy Committee

The Patient Advocacy Committee (PAC) has a vital role in ensuring that patient voices are heard within EHA. It acts as a conduit between hematology professionals and patients, and facilitates ongoing, mutually beneficial dialogue between these groups. 

Priorities

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

Responsibilities 

• Represent the position of the patient community, when decisions are taken in the context of EHA.  
• Perform joint meetings with the appropriate and relevant EHA committee on critical issues of concern to patients (disease-specific or general topics). 

Involvement in EHA Congress

PAC representatives (patient advocates) are officially involved in the annual EHA Congress through: 

• Joint sessions (e.g. EHA-Patient Symposium) 
• The scientific program, via a seat on the SPC 

Members representing a patient advocacy organization 

• Acute Leukaemia Advocates Network (ALAN): Samantha Nier
• CCI Europe: Anita Kienesberger
• CLL Advocates Network (CCLAN): Pierre Aumont
• European Federation of Associations of Patients with Haemochromatosis (EFAPH): Dag Erling Stavik
• European Heamophilia Consortium (EHC): William McKeown
• European Organisation for Rare Diseases (EURORDIS): Ariane Weinman 
• European Sickle Cell Federation: Miriam Santos Freire
• Fanconi Hope: Jeannie Dalgleish 
• ITP Support Association: Dianne White 
• 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
  

Composition

We’re comprised of the following: 

• A Chair 
• Two Vice-Chairs 
• 16 patient advocacy organizations as members   

Rotation

The Chair and Vice-Chairs serve for a maximum of three years. After their terms have finished, these individuals can continue to represent their organizations in the PAC.  

Join the PAC

In order to join us, your organization must: 

• Serve as a European umbrella for its member organizations and have member organizations in at least ten European countries (or five in case of ultra-rare diseases) 
• Represent the interests of patients with at least one hematological disease 
• Be registered as a non-profit organization, preferably in a European country 
• Have no statutory or structural government, political, or commercial affiliation 
• Not be funded in a way that compromises autonomous decision-making and governance 
• Be transparent about its structure, governance, and funding 
• Be willing to actively coordinate and collaborate with the other partner organizations partnering with EHA, and through the EHA Partner Organizations Workgroup 

If your organization is funded by commercial parties, you must: 

• Adhere to the EFPIA Code of Conduct  
• Share related governance with EHA 

For more information, please send an email to community@ehaweb.org. 

Get in touch

If you’re a patient with a hematologic disorder, or you care for someone who has one, you’re welcome to contact us about: 

• Getting advice and support 
• Becoming a patient advocate 

You can also find details of organizations that can offer advice and support on our patient organizations page. 

Connect with the PAC

You can find us on X at @EHAPatient.