The Haematology Community Advisory Board (Hem-CAB) is a working group of the European haematology patient community, an informal network of 11 Pan-European haematology umbrellas with more than 260 European member organisations, governed by the seven European Patient Advocacy Groups (ePAG) representatives with long-standing advocacy experience. The network is currently hosted by Myeloma Patients Europe (MPE).
The European haematology patient community works closely with researchers, academics, government, policy makers, authorities and the pharmaceutical industry, featuring a systematic, efficient and accountable network of advocates speaking from the unique perspective of the haematologic patient community. It is strongly involved in the European Reference Network EuroBloodNET and has established strong links with the European Haematology Association (EHA).
The European haematology patient community plans to hold the Hem-CAB as a platform to enable discussion between leading advocates and industry representatives in a “safe harbour environment”.
More precisely, the objectives of the Hem-CAB are:
- Patient-run community advisory boards where patient organisations set the agenda, pick the topics and invite stakeholders
- Two-way dialogue with industry (and potentially researchers, academics and authorities) to improve patients’ well-being and outcomes
- Global platform where the needs and views of the patient community can be expressed
- Address challenges that patients face in accessing optimal diagnosis, monitoring, treatment and care
- Improve quality of patient information and education
- Develop patient-focused research and clinical trials
- Build capacity and knowledge in the patient community