FORUM DES PATIENTS EUROPEENS

Their core work

The European Patients' Forum is a Brussels-based umbrella NGO that represents patient organizations across Europe, ensuring the patient voice is embedded in health research, drug development, and regulatory processes. They bring structured patient engagement methodologies to large clinical research consortia — from trial design and benefit-risk assessment to health data governance and self-management interventions. Their practical contribution in EU projects is translating complex medical research into patient-relevant outcomes and ensuring research programs remain accountable to the people they aim to serve.

What they specialise in

How they've shifted over time

In 2015–2018, EPF focused heavily on regulatory and reimbursement pathways, adaptive trial design, and establishing the foundational case for patient engagement in R&D — projects like ADAPT-SMART and PARADIGM were about building frameworks for meaningful patient involvement. From 2019 onward, the focus shifted toward technical implementation: clinical trial platform operations, health data governance, translational research infrastructure, and disease-specific consortia in immunology and oncology. The trajectory shows a clear move from advocacy-level participation to hands-on involvement in data-driven, precision medicine research programs.

EPF is moving deeper into technical health data projects and disease-specific research consortia, making them increasingly relevant for precision medicine and digital health initiatives that need structured patient input.

How they like to work

EPF operates overwhelmingly as a participant (15 of 17 projects), joining large consortia where they serve as the designated patient voice — their two coordinator roles (PARADIGM, EFOEUPATI) were specifically about patient engagement methodology. With 291 unique partners across 29 countries, they function as a high-connectivity hub in the European health research network, rarely repeating the same consortium composition. This makes them easy to onboard: they are experienced joiners who understand their role, deliver on patient engagement deliverables, and connect you to a vast network of health research actors.

With 291 unique consortium partners across 29 countries, EPF has one of the broadest collaboration networks in the EU patient advocacy space. Their partnerships span universities, pharma companies, regulatory bodies, and research infrastructures across virtually all EU member states.

What sets them apart

EPF is one of very few organizations that can provide structured, methodologically rigorous patient engagement at European scale — not just token patient advisory boards, but systematic input into trial design, data governance, and regulatory strategy. Their dual experience as both IMI (public-private) and Horizon 2020 participants means they understand the requirements of industry-driven and publicly-funded research alike. For consortium builders, adding EPF instantly strengthens any proposal's patient engagement credentials with a track record across 17 H2020 projects.

Highlights from their portfolio

• PARADIGM
  One of only two projects EPF coordinated, with their largest single grant (EUR 702K) — established the reference framework for meaningful patient engagement in medicines development.
• COMPAR-EU
  Largest participation budget (EUR 477K) in a project comparing self-management interventions across four chronic diseases — demonstrates EPF's capacity for substantive research contributions beyond advisory roles.
• EU-PEARL
  Major platform trial initiative (EUR 459K to EPF) combining Bayesian statistics, data governance, and patient-centredness — represents their evolution toward technically complex clinical research.