Our Projects
The European Patient Advocacy Institute (EPAI) spearheads several impactful initiatives aimed at enhancing patient advocacy, research, and healthcare delivery across Europe. These key projects represent collaborative efforts to empower patients, advocate for their needs, and generate evidence-based solutions within the healthcare landscape.
WECAN Secretariat
EPAI coordinates the administrative and project management activities for WECAN, the network of pan-European cancer patient organisations. It supports the WECAN membership and the WECAN coordination team to take and implement its decisions and projects effectively.
The WECAN Secretariat supports a number programs and initiatives of WECAN, enhancing the role and impact of patient organisations. The WECAN Secretariat ensures effective management and support for the network’s activities and collaborations.
WECAN Academy
To be able to advocate for patients in all different areas of need – e.g. patient care, healthcare policy or research – more effectively and to grow a new generation of advocacy leaders, patient advocates need to continuously build their skills and expertise in those areas.
By managing the WECAN Academy meeting (face to face) and WECAN Online Academy (e-learning platform) for the network, EPAI assists WECAN and its WECAN Academy Steering Committee in increasing the capacity and number of well-trained patient advocates and patient experts in order to further grow a community of activists across the cancer patient community that can induce change.
WECAN Evidence-Based Advocacy Programmes
Patients and patient advocates may be in the best position to express what patients want and need. However, individual opinions are not always the most effective to convince researchers, healthcare providers, or regulatory decision-makers.
In order to help healthcare to focus on the true needs of patients and their subpopulations, patient advocates should generate robust evidence. “Evidence-Based Patient Advocacy” means advocating in a targeted, scientific, well-educated, and professional manner to measure the impact of advocacy work. EPAI supports WECAN and its WECAN Academy Programme Committee in designing and implementing special training programs on evidence-based advocacy and evidence generation.
WECAN EuroACT
The European Atlas on Clinical Trials in Cancer and Hematology (EuroACT) is a research project initiated and led by WECAN and the European Hematology Community.
The project aims to understand the clinical trial landscape in the European region, based on data extracted from all relevant European clinical trial registers.
Data from the past five years will unveil differences where clinical trials have been run in European countries and will describe how and which patient-reported outcomes (PROs) and quality-of-life (QoL) instruments have been used in clinical trials. EPAI supports WECAN and its EuroACT Steering Committee to guide and implement this evidence generation project.
International MDS Alliance Secretariat
EPAI acts as legal host and Secretariat for the MDSA, since currently the MDSA is an informal network but not a legal entity.
EPAI supports the MDSA Steering Committee by running the MDSA Secretariat, providing the day to day management and administration, membership support, grants and sponsorship management and financial management.
Young Patient Advocates Training Program in Rheumatology and Dermatology (YPP D&R)
EPAI facilitates an international community of young patient advocates in the areas of e.g. psoriasis or rheumatoid arthritis.
EPAI provides training sessions and the development of project plans for joint evidence generation projects addressing the specific issues of patients living with those conditions at a young age.
European Hematology Association (EHA) Adolescent and Young Adult (AYA) Training
EPAI assists EHA in developing and delivering a training program for AYA patients and survivors aged between 20-30.
This training program is designed to equip participants with the essential knowledge and capabilities needed for impactful advocacy, as well as foster an easy integration within the EHA AYA Task Force which was established to address the specific needs of this population of patients affected by hematological diseases.
HARMONY Foundation
Since 2017, the EU-funded big data project HARMONY Alliance has brought together more than 120 partners/member organizations from 19 European countries to establish a big data platform and conduct more than 30 research projects.
With the end of EU funding in 2024, EPAI is amongst the four founding organisations and trustees that establish the non-profit, collaborative HARMONY Foundation in Spain to sustain and grow HARMONY.