European Patients' Forum

📢 Save the date: EPF Youth Congress 2026 🗓️ 23–24 October 2026 | Brussels, Belgium The European Patients’ Forum and The EPF Youth Group are launching the first-ever EPF Youth Congress, bringing together young patient advocates, policy-makers, healthcare professionals, researchers and civil society representatives from across Europe. How do we secure the future of young patient advocacy in times of multiple crises? From pressures on healthcare systems and economic uncertainty to climate change, misinformation and shrinking civic space, young people living with chronic conditions are facing growing challenges. At the same time, young patients are increasingly stepping forward as advocates, researchers, changemakers and community leaders. Over two days, participants will explore topics including: 🔹 Youth participation in health policy 🔹 Health equity and social protection 🔹 Climate, health and chronic conditions 🔹 Meaningful patient involvement 🔹 The future of youth advocacy in Europe The programme will include discussions, workshops, networking opportunities and collaborative sessions designed to connect people across sectors and experiences. Make sure to pencil the dates into your calendar! More information on registration, speakers and the agenda will follow soon. 🔗 Learn more: https://lnkd.in/e4HbTFbV #EPFYouthCongress #YouthAdvocacy #PatientAdvocacy #HealthEquity #YouthParticipation #EUHealth

Earlier this month, EPF took part in discussions organised by the European Commission on the draft EU guidance on infection prevention and control in human health, developed with the European Centre for Disease Prevention and Control (ECDC) as part of the EU actions on antimicrobial resistance.   Antimicrobial resistance is one of the most serious patient safety challenges facing healthcare systems today, particularly for people living with chronic conditions, who are more frequently exposed to healthcare settings and treatments involving antibiotics.   This is why EPF welcomed the opportunity to contribute to the ECDC draft EU guidance on infection prevention and control programmes in healthcare and see the perspective reflected throughout the document.   Among the points we especially welcome: • the recognition that patients’ experiences and feedback should help shape safer healthcare systems; • the focus on the relationship between healthcare professionals and patients as a key part of effective infection prevention; • the shift towards a stronger culture of patient safety and prevention; • the emphasis on improving health literacy and awareness around antimicrobial resistance and infection prevention; • the call to support patient organisations in advocacy and awareness-raising efforts; • and the acknowledgement that approaches must reflect patient diversity and different cultural contexts across Europe.   Thank you to ECDC for the continued collaboration and for ensuring the patient perspective remains part of these important discussions.   #AntimicrobialResistance #PatientSafety #HealthLiteracy Borislava Ananieva  

Last week, EPF attended the final IMMUcan General Assembly in Berlin, bringing together partners from across Europe to reflect on the achievements, lessons learned, and lasting impact of this major collaboration in cancer research. Over the past years, IMMUcan has grown into one of the largest European initiatives dedicated to profiling the tumour microenvironment across cancer types, helping advance understanding of how cancer treatment can become more precise and personalised. Throughout the project, EPF led Work Package 2 on communication, public relations, and the involvement of patient advocacy organisations. For EPF, one of the key takeaways from the project has been the importance of building strong bridges between science and society, and ensuring that complex research remains accessible and meaningful beyond scientific communities. As IMMUcan concludes later this year, its legacy will continue through the data generated, the scientific publications ahead, and the collaborative networks built across Europe. Flavia Topan, PhD

How can real-world health data support better healthcare decisions for patients across Europe? In this episode, we are joined by Bethany Shinkins and Ine Vandersmissen to discuss the growing role of real-world data and real-world evidence in healthcare decision-making. The conversation explores: 🔹 Why traditional clinical trials do not always reflect the full diversity of patient experiences 🔹 How real-world evidence can complement existing research 🔹 What is needed to build trust in the use of heterogeneous health data 🔹 The recommendations developed within the IDERHA project to support the acceptance of real-world evidence in regulatory and HTA decision-making A strong focus is placed on transparency, scientific robustness, and meaningful patient involvement. Through initiatives such as the IDERHA Public Forum, the project continues to foster dialogue among patients, researchers, policymakers, and healthcare stakeholders on the future use of health data and evidence generation. 🎧 Listen to the episode: https://lnkd.in/eZ_vqjSK #IDERHA #RealWorldEvidence #HealthData #EHDS #PatientEngagement #HTA #HealthcareInnovation #EUHealth Flavia Topan, PhD | Bianca Pop

EPF welcomes the agreement reached by the EU institutions in the very early hours of the morning on the Critical Medicines Act and congratulates all policymakers involved in the discussions.   We will now await the final text of the agreement in order to fully analyse the measures adopted and assess their potential impact on patients, in particular how meaningful patient involvement has been integrated throughout the framework.   However, we already welcome the decision by EU legislators to include orphan medicines for rare diseases within the scope of the legislation, as well as the increased transparency regarding contingency stocks. At EPF, we strongly advocate for the establishment and maintenance of digital reporting systems providing real-time updates on national contingency stocks and stockpiles, a major gap that still exists today.   While we strongly welcome the inclusion of collaborative procurement mechanisms, we regret that joint procurement was not included within the Critical Medicines Act. Considering the challenges currently faced by many countries, this was a missed opportunity to move closer to a true European Health Union where both challenges and opportunities are addressed collectively for the benefit of patients.   EPF stresses that the implementation of the Critical Medicines Act must now be evaluated against measurable outcomes, including the reduction of medicine shortages, improved access across Member States, and protection against increased out-of-pocket costs for patients. We stand ready to work with the EU institutions to ensure that the implementation of the Act delivers equitable, safe, and affordable access to medicines for all patients. EU Health and Food Safety | Olivér Várhelyi | Tomislav Sokol | Tiemo Wölken | François Janssens | Laure Geslin

Less than a month to go before the publication of EPF's “Barometer on the involvement of patient organisations in health policy at national level”, a landmark initiative addressing the persistent lack of transparency regarding whether and how patient organisations are involved in health policymaking at national level. This first-of-its-kind, NGO-led initiative introduces objective metrics to deliver consistent and actionable insights into patient involvement across Europe. The initiative aims to: ➡️ Map the level of patient involvement in the development, implementation and evaluation of health policies in EU Member States; ➡️Identify good practices in patient involvement in health policy and the mechanisms and structures in place to facilitate the involvement of patient organisations in policy-making processes; ➡️Examine the barriers and challenges that patient organisations face in participating effectively in health policy-making.   The Barometer is based on extensive input from EPF’s national coalitions of patient organisations: ✅ 27 national coalitions of patient organisations contributed data; ✅ 23 countries were covered; ✅ Over 30 best practices and case studies were co-created with patient organisations. On 4 June, at the Patient Engagement Open Forum (PEOF) to be held in Seville, Spain, policy-makers and patient organisations will discuss in detail the lessons learnt and the results of the EPF Barometer. More details to follow soon! Kaarina Tamminiemi | Javier Padilla | Mary Butler | Marios Charalambides | Edita Müllerová | Katja Čič | Pedro Carrascal

EPF welcomes the SANT Committee’s clear recognition that public health must be part of the European Competitiveness Fund (ECF), including support for access to medicines, prevention, health literacy, patient safety, and civil society. However, significant risks remain. Under the proposed 2028–2034 EU budget (MFF), the standalone EU4Health programme would be discontinued and integrated into the ECF without a dedicated budget. This would leave public health competing with other priorities, with no guarantees for sustained investment. Without clear safeguards, there is a real risk that public health will be significantly weakened or effectively absent from the next EU budget. EPF calls on: ❗ The ITRE Committee to reflect SANT’s priorities ❗Member States to ensure a strong and protected public health dimension A standalone public health programme remains the most effective solution. At minimum, ring-fenced funding and strong governance for health within the ECF are essential. Read our full statement: https://lnkd.in/gizv28Sh #EUHealth #MFF #PublicHealth

Yesterday, EPF meet with MEP Oliver Schenk, rapporteur for the revision of the Medical Devices Regulations, to exchange views on key priorities for patients. We discussed the importance of maintaining high standards of patient safety, improving transparency across the medical devices system, and ensuring that EUDAMED becomes a fully functional and user-friendly tool to support both. We also underlined the need for stronger patient involvement in the governance of medical devices. Patients bring essential lived experience and real-world perspectives that can meaningfully inform decision-making. Read our position on the revision here: https://lnkd.in/eMnnJxHM Valentina Strammiello | Yasemin Zeisl | Solène Jouan

At the EHDS-AI CONNECT 2026 Conference in Limassol, EPF was represented by Bianca Pop, contributing to key discussions on how to ensure that the European Health Data Space (EHDS) delivers real value for patients, not just strong legislation. EPF engaged across several core sessions, including: • Plenary 1 – EHDS from Policy to Practice: Enabling Better Care and Health Innovation; • Plenary 6 – Secondary Use of Health Data: Insights from TEHDAS2 Joint Action, where EPF provided a front row comment on draft guidelines for health data access bodies, emphasising the importance of clear patient information through a “Citizen Information Point”; • Plenary 7 – Bridging Primary and Secondary Use: Integrating Xt-EHR and TEHDAS2 Results. The EHDS has the potential to transform healthcare in Europe. At its core, it is about ensuring that a patient’s health data is accessible when and where it is needed. Today, many patients still face fragmented care, repeated tests, and gaps in information when moving across borders. EHDS aims to change that. Across discussions, one message was consistent: trust is the foundation. Patients are ready for EHDS, but they need: • Clear and accessible information about how their data is used • Strong data protection and accountability • Real control over their health data • Systems that are inclusive and usable for all Discussions on TEHDAS2 highlighted the importance of practical guidance for the secondary use of health data, particularly in supporting Health Data Access Bodies to communicate effectively with patients, including on opt-out mechanisms and the handling of clinically significant findings. As we move forward, the challenge is to make it work in practice across diverse health systems. #EHDS #DigitalHealth #HealthData #TEHDAS2

ImmUniverse invites patients to join a free online meeting: Living with Atopic Eczema or IBD? Discover the Latest Research Insights at the ImmUniverse Patient Meeting! This is a unique opportunity to explore the complexities of atopic eczema and inflammatory bowel disease (IBD) with leading ImmUniverse experts, who will present key project outputs and findings. 🗓️ When? 13 May 2026, 09:00–10:30 CEST / 08:00–09:30 GMT 💻 Where? Online via Teams 💡 What’s on the agenda? 📌 What is ImmUniverse? 📌 Atopic eczema: key findings and outputs 📌 IBD: key findings and outputs The meeting will conclude with a discussion and Q&A session, where you can ask questions and share your perspectives. Don’t miss this opportunity to engage with experts and others living with atopic eczema or IBD, and learn more about the latest research. ✍️ How to join? Register now via this link: https://lnkd.in/ec2QKrXC