European Patients' Forum

European Patients' Forum
Name	European Patients' Forum
Abbreviation	EPF
Formation	2003
Type	Non-profit, advocacy
Headquarters	Brussels, Belgium
Region served	Europe
Leader title	President
Leader name	Natacha Cantalloube

European Patients' Forum

The European Patients' Forum is a Brussels-based umbrella organization bringing together patient groups and health coalitions from across Europe. It engages with European Union institutions such as the European Commission, the European Parliament, and the European Council to represent patient interests in policy arenas including cross-border healthcare, pharmaceutical regulation, and public health emergencies. The Forum works with international bodies like the World Health Organization, regional networks such as the Council of Europe, and civil society actors including European Public Health Alliance and disease-specific federations.

History

Founded in 2003, the organisation emerged amid policy developments including the European Union enlargement and the implementation of the Directive 2011/24/EU on patients' rights in cross-border healthcare. Early interlocutors included advocacy groups linked to chronic conditions represented by the European Diabetes Federation, the European Cancer Organisation, and rare disease networks like EURORDIS. The Forum's formative years intersected with major public health events such as the 2009 swine flu pandemic and the later COVID-19 pandemic, prompting collaboration with regulatory agencies like the European Medicines Agency and public bodies including the European Centre for Disease Prevention and Control. Over time the organisation expanded its remit to engage with initiatives led by the European Commission Directorate-General for Health and Food Safety and participate in advisory roles for programmes linked to the Horizon 2020 research framework.

Mission and Objectives

The Forum's mission focuses on promoting patient-centred policy in areas governed by institutions including the European Parliament Committee on the Environment, Public Health and Food Safety, the European Commission, and specialised agencies such as the European Medicines Agency and the European Centre for Disease Prevention and Control. Objectives include improving access to treatment featured in directives like the Charter of Fundamental Rights of the European Union and the Directive 2011/24/EU, advocating for equity in reimbursement policies debated in the European Council and national parliaments, and influencing research priorities funded under programmes such as Horizon Europe. It seeks to elevate patient perspectives in clinical guideline processes coordinated by organisations like the European Society of Cardiology, the European Respiratory Society, and the European Federation of Neurological Associations.

Governance and Structure

The organisation is governed by an elected board and works through thematic working groups and member councils that mirror governance models used by networks such as European Patients' Rights and Cross-Border Healthcare Network and federations like the European Federation of Pharmaceutical Industries and Associations (for stakeholder dialogue). Legal and administrative registration ties place its secretariat in Belgium, interacting with institutions including the European Commission and national ministries such as the French Ministry of Solidarity and Health and the German Federal Ministry of Health. Leadership often liaises with civil society leaders associated with organisations like European AIDS Treatment Group, patient advocacy movements such as International Diabetes Federation Europe, and professional societies including the European Association of Hospital Pharmacists.

Activities and Advocacy

Activities span policy advocacy, capacity-building, and participation in regulatory consultations coordinated by the European Medicines Agency and research programmes funded by Horizon Europe. The Forum organises conferences and workshops in partnership with bodies such as the World Health Organization Regional Office for Europe, academic institutions like University College London, and think tanks including the European Policy Centre. Advocacy campaigns have targeted legislative dossiers debated in the European Parliament and regulatory reforms promoted by the European Commission, addressing issues raised by networks such as EURORDIS and the European Alliance for Personalised Medicine. The Forum provides patient input to clinical pathway initiatives by societies like the European Society for Medical Oncology and collaborates on guidelines with organisations such as the European Centre for Disease Prevention and Control and the European Observatory on Health Systems and Policies.

Membership and Partnerships

Membership comprises national and European patient organisations, disease-specific federations, and consumer groups similar to Age Platform Europe, Stroke Alliance for Europe, and Kidney Patient Associations. Partnerships extend to professional and scientific organisations like the European Federation of Neurological Associations, academic partners such as the Karolinska Institutet, and policy networks including the European Health Forum Gastein. The Forum engages with funders and collaborative platforms including the Innovative Medicines Initiative and patient registries affiliated with ERNs (European Reference Networks), coordinating with entities such as EURORDIS, the European Cancer Organisation, and the International Federation of Pharmaceutical Manufacturers & Associations for multi-stakeholder projects.

Funding and Accountability

Funding sources include grants from the European Commission under programme lines like Horizon 2020/Horizon Europe, project funding from public–private partnerships such as the Innovative Medicines Initiative, and membership fees from patient organisations comparable to those in European Consumer Organisation networks. Transparency practices align with disclosure standards promoted by the European Transparency Register and reporting expectations from institutions like the European Ombudsman and the Accountability Lab. Financial oversight involves audits and reporting to donors including EU directorates and foundations similar to the Wellcome Trust and the Bill & Melinda Gates Foundation, and governance accountability is maintained through statutes and elections analogous to procedures in networks like EURORDIS and the European Patient Safety Foundation.

Category:European medical and health organisations