European Patients' Forum

5 days to go! Our High-Level Policy Event is around the corner. On 16 October, we'll conclude the #Vote4Patients campaign by bringing together decision-makers, MEPs, and EPF members to discuss patient involvement in health policy. For this initiative, MEPs Adam Jarubas (Poland), András Tivadar Kulja (Hungary), Ondřej Dostál (Czechia), Tilly Metz (Luxembourg), Vytenis Povilas Andriukaitis (Lithuania) MEP Kateřina Konečná (Czechia), and MEP Stine Bosse (Denmark) will join us for two fireside chats and explore how can we ensure systemic involvement of patient organisations in the EU. Stay close for updates! Learn more about the agenda here: https://bit.ly/3MPxJKn

🇪🇺🎙️“This fragmentation of the health portfolio is a potential risk but also a huge opportunity to put health in all policies,” says Anca Toma Toma, Executive Director of the European Patients' Forum in our latest #BreakTheBubble episode.     Together with Hans Martens, she addresses pressing questions around the European Health Data Space (EHDS) and its impact on patients across the EU. What does the future hold for EU health policy? How can we ensure that health inequalities don’t become entrenched?    Join the conversation to explore EPF’s vision for the future and what changes lie ahead for patients in the EU.   🎧 Listen to the full episode here 👉 https://bit.ly/3U1FMYB and get in touch if you want to know more.

On 2nd October, Milana Trucl (Policy Officer at EPF) joined Jelena Malinina (Data Director at EURORDIS-Rare Diseases Europe), MEP Vytenis Andriukaitis, Michele Calabro' (Director at EUREGHA - European Regional and Local Health Authorities), and the journalist Gerardo Fortuna for the Euronews Health Summit in Brussels. The panel of experts discussed the European Health Data Space (EHDS) - how it is designed to revolutionise the way health data is used and improve the lives of patients. Milana Trucl: "Many patients still face barriers when trying to access some or all of their electronic health records, both nationally and across borders. With the mandatory introduction of electronic health records (EHRs) for all EU citizens, EHDS is set to overcome these barriers and ensure that patients can access their health data electronically, at no cost, and immediately after it is recorded in an EHR system."   If you want to listen to the full discussion, watch the event here 👉 https://lnkd.in/ePsrag_F #EHDS #HealthData #patients

One week to go until the EPF High-Level Policy Event! In our latest podcast episode, EPF President Marco Greco shares insights into the Patient Organisations' Manifesto and its vision for patient-led change in European healthcare.   Open dialogue and innovative partnerships are the key to redefining #patient #involvement in healthcare #policy. Listen now and join the conversation: https://lnkd.in/dNTRvQBk

We are excited to launch our Advocacy Toolkit to support patient organisations and advocates in shaping the revision of the EU pharmaceutical legislation. This document provides resources to promote a more patient-centred healthcare system, ensuring the revised legislation improves access to safe, effective medicines and encourages innovation in addressing unmet medical needs. Follow the link and access our resources: https://bit.ly/4eqDU3L

Tomorrow, Data Saves Lives Deutschland will host an online session about the Research Data Centre for Health (FDZ Gesundheit). FDZ Gesundheit provides researchers with secure access to health data. Join the conversation to find out how this can benefit patients. Time: 13:00-14:00 CET More details here 👉 https://bit.ly/3XOUHGK If you would like to join, please send a message to [email protected] Bundesinstitut für Arzneimittel und Medizinprodukte Data Saves Lives #DSL #HealthData

The countdown has begun: 10 days left until our High-Level Policy event! Serving as the inaugural EPF event under the 2024-2029 EU political mandate, it aims to conclude the #Vote4Patients campaign, by bringing together EPF member organisations, policymakers, and other stakeholders. The first session, “Patient Involvement Across the Healthcare Continuum” will explore how the perspectives of patients can be integrated across healthcare systems. The session will be moderated by Anca Toma, Executive Director of European Patients' Forum, and speakers include Melanie Carr from the European Medicines Agency, Marko Korenjak from the European Liver Patients' Association - ELPA, Maya Matthews from DG SANTE (EU Health and Food Safety), Frederico Guanais from OECD - OCDE, and Nathalie Moll from the EFPIA - European Federation of Pharmaceutical Industries and Associations. Learn more about the agenda here: https://bit.ly/3MPxJKn

What role do patients play in healthcare innovation? Valentina Strammiello, our Director of Strategic Initiatives, recently spoke with TrendSanità - Policy & Procurement in HealthCare about the importance of patients in EU policy decisions and the future of healthcare across Europe. She emphasised that: "Active engagement, dialogue and patient involvement will be our guiding stars for the next decade. The patient must be involved at all levels of health policy." Read the full article here ➡️ https://lnkd.in/dV_vJsKZ #patients #healthcare #innovation

Together with The AMR Narrative, we released a statement last week on the Declaration of the UN General Assembly High-level Meeting on Antimicrobial Resistance (AMR). We call for more patient and civil society participation in AMR policies.   According to MEP Stine Bosse, patient organisations must work together with policy-makers to achieve real change.      Read our statement here ➡️ https://bit.ly/3N1kHtn #PatientVoice #AMR #AntimicrobialResistance #UNGA79

Yesterday, our Executive Director, Anca Toma, joined a remarkable panel at The Parliament Health Summit, featuring MEP Stine Bosse, Stefan Seyfried (Vice President at Daiichi Sankyo Europe), and Kasia Jurczak (Head of Unit for Combating Diseases at the European Commission’s DG Research and Innovation), in a session moderated by Sarah-Taïssir Bencharif, MD. The focus of the discussion was on communicable diseases and the vital role of early prevention, diagnosis, detection, and accessible treatment in ensuring better #health for all in Europe. Anca advocated for greater involvement of #patient organisations in upcoming policy debates and implementations. This collaboration is crucial for advancing healthcare outcomes and requires the participation of all #stakeholders in the system.