EP PerMed - the European Partnership for Personalised Medicine

🚨 Call for Nominations: ERDERA Multistakeholder Advisory Group 🚨 The European Rare Diseases Research Alliance (@ERDERA) is seeking experts to join its Multistakeholder Advisory Board (MAB)! This is your chance to help shape the future of rare disease research across Europe. We are looking for professionals in the following fields: 1. Rare Disease Researchers 2. Healthcare Professionals 3. Public-Private Partnership and Industry Professionals 4. Digital Health and Data Scientists 5. Regulatory, HTA and Policy Groups 6. Funding and Grant Management Bodies 7. Education and Training Personnel 8. Strategic Coordinators 9. Ethics and Patient Consent Groups 10. Legal Experts in Healthcare and Researchers Your expertise will guide ERDERA in its mission to advance prevention, diagnosis, and treatment for over 30 million people in Europe living with rare diseases. 🔗 Click here to find more information: [https://loom.ly/-fvnkKs] 🔗 Submit your application by October 31, 2024! #ERDERA #RareDiseases #HorizonEurope #AdvisoryBoard #ResearchInnovation #PatientAdvocacy EU Science, Research and Innovation Horizon Europe Inserm Inserm Transfert EURORDIS-Rare Diseases Europe World Duchenne Organization Fondazione Telethon Teamit EATRIS ECRIN (European Clinical Research Infrastructure Network) BBMRI-ERIC RARE DISEASES INTERNATIONAL International Rare Diseases Research Consortium (IRDiRC) conect4children Stichting TEDDY Network Daria Julkowska

✨ PROPHET Team gathered in Stockholm for its annual meeting, from 30 September to 2 October 2024. Thanks to the Karolinska Institutet Team! ✨  On Tuesday 1 October 2024, we hosted a very productive stakeholder session gathering insightful feedback on our latest draft SRIA 📑💡  Engaging with stakeholders ensures that our work aligns with their needs and expectations. Thank you to all who contributed and shared their inputs helping in shaping the path forward! 👏 We are also happy to share the PROPHET Mapping Results! 🌟👏 Scan the QR code to find out more! ⬇️ Università Cattolica del Sacro Cuore, BBMRI-ERIC, Universiteit Gent, Katholieke Universiteit Leuven (KU Leuven), G.A.C. Group (GAC) France, FORUM DES PATIENTS EUROPEENS, University of Tartu, Terveyden ja hyvinvoinnin laitos (THL), Debreceni Egyetem, Allelica, Inc, Cittadinanzattiva APS, Instituto Nacional de Saúde Doutor Ricardo Jorge, Centro de Investigación Biomédica en Red CIBER, Karolinska Institutet, EMBL, EUPHA - European Public Health Association, Amsterdam UMC #Personalised #Prevention #Medecine #Europe #Health #Stakeholders #collaboration

📢 Join the 2024 EU Health Policy Platform Annual Meeting! 🏥 👉 Organized by EU Health and Food Safety, the “EU Health Policy Platform Annual Meeting – Stakeholders’ Dialogue: 2024 Thematic Networks – final Joint Statements” will take place both in-person at Euroforum Luxembourg and online on 26 November 2024 from 9:30 to 16:00 CET 📆 The meeting will feature presentations from the four 2024 Thematic Networks: ▪️ A Global Continuum for Healthy Generations by PXL University College ▪️ Advancing Precision Medicine for Europe's Cancer Patients with AI-powered Imaging by the European Society of Radiology ▪️ Natural Language Processing for Cancer Genomics by the Robert Koch Institute ▪️ Towards an EU Coordination Plan for the Brain by the European Brain Council After each presentation, there will be insights from the European Commission and a Q&A session with the audience. 🔗 Register now via this link https://lnkd.in/dZBui9rW

🚨 Call for Nominations: ERDERA Multistakeholder Advisory Group 🚨 The European Rare Diseases Research Alliance (@ERDERA) is seeking experts to join its Multistakeholder Advisory Board (MAB)! This is your chance to help shape the future of rare disease research across Europe. We are looking for professionals in the following fields: 1. Rare Disease Researchers 2. Healthcare Professionals 3. Public-Private Partnership and Industry Professionals 4. Digital Health and Data Scientists 5. Regulatory, HTA and Policy Groups 6. Funding and Grant Management Bodies 7. Education and Training Personnel 8. Strategic Coordinators 9. Ethics and Patient Consent Groups 10. Legal Experts in Healthcare and Researchers Your expertise will guide ERDERA in its mission to advance prevention, diagnosis, and treatment for over 30 million people in Europe living with rare diseases. 🔗 Click here to find more information: [https://loom.ly/-fvnkKs] 🔗 Submit your application by October 31, 2024! #ERDERA #RareDiseases #HorizonEurope #AdvisoryBoard #ResearchInnovation #PatientAdvocacy EU Science, Research and Innovation INSERM Inserm Transfert EURORDIS-Rare Diseases Europe World Duchenne Organization Fondazione Telethon Teamit EATRIS ECRIN (European Clinical Research Infrastructure Network) BBMRI-ERIC RARE DISEASES INTERNATIONAL International Rare Diseases Research Consortium (IRDiRC) conect4children Stichting TEDDY Network Daria Julkowska Rima NABBOUT-TARANTINO German Aerospace Center (DLR) ANR, the French National Research Agency ZonMw Research Council of Lithuania | Lietuvos mokslo taryba EBERHARD-KARLS-UNIVERSITAT TUBINGEN University of Tartu Centro Nacional de Análisis Genómico (CNAG) Vall d’Hebron Institute of Research (VHIR) - Vall d'Hebron Institut de Recerca University of Twente ACTA (Academisch Centrum Tandheelkunde Amsterdam) Maastricht University Gianni Benzi ONLUS - Pharmacological Research Foundation Universidade de Coimbra Foundation For Rare DiseasesAICIB - Agência de Investigação Clínica e Inovação Biomédica IRCCS Istituto Nazionale Tumori Fondazione G Pascale, Napoli, Italy

👇 Second wave of EU4Health calls including the call for proposals on #PersonalisedCancerMedicine - (CR-g-24-99) https://lnkd.in/eazZQgPZ

💬 We Need Your Feedback! THCS is seeking input from experts within our partner organizations and beyond. If you have experience in the transfer, adaptation, or implementation of health and care solutions, we want to hear from you! Your feedback will help shape the next version of the THCS Transferability and Implementation Framework, and may offer you new insights into best practices. ♻ What is the THCS Transferability and Implementation Framework? THCS Transferability and Implementation Framework is designed to support, promote, and accelerate the transfer of evidence-based solutions across health and care systems. This framework lays out key principles and tasks for successfully transferring, adapting, and implementing solutions developed elsewhere. 📋 What's Inside the Framework? 1️⃣ The foundational principles of transferability and implementation. 2️⃣ Guidelines for transferring and adapting solutions. 3️⃣ Comprehensive content for describing solutions. 4️⃣ Essential tasks for effective transfer and implementation. 🎯 Who Is This For? The framework is intended for professionals involved in planning, coordinating, and executing development activities within health and care organizations—whether through programs, projects, or daily operations. 🗓️ Survey Deadline: 31 October 2024 🔗 Link: https://lnkd.in/dRrU4WJd

Are you familiar with the concept of Precision medicine? What’s the difference between precision and personalised medicine? What role does ethics play in any considerations around personalised medicine? Does advocacy require ethical considerations? What does ethics play in personalised medicine? This and a lot more was discussed during the EP PerMed Symposium on Ethical, Legal, and Social Aspects of Personalised Medicine organised by EP PerMed - the European Partnership for Personalised Medicine yesterday, September 26, 2024 in Brussels, Belgium. Informative and thought provoking presentations by expert speakers were complemented by a variety of questions from the audience in the room and online. From conceptual to very pragmatic points and conclusions were drawn. Following the event, the first EP PerMed Citizen Engagement Board (CEB) Meeting took place. The CEB experts and the EP PerMed Work Packages’ representatives discussed the main issues related to citizen engagement activities within EP PerMed. Key points discussed • The Citizen Engagement Strategy for EP PerMed, as guideline document • EP PerMed short-term and long-term actionable items for public engagement on personalised medicine • Existing and future synergies between Work Packages • Social and behavioural barriers and facilitators in citizen engagement on personalised medicine FH Europe Foundation was proudly represented by Magdalena Daccord, who serves as an expert on the Board along with Prof. Joy Zhang, Marie Nugent, PhD and David Wyatt. The board is coordinated by Gianni D'Errico and Matteo Gentili. The board meeting was also attended by Monika Frenzel Christine Hasenauer and Casper Ullsten-Wahlund Bart Haex . The event offered an excellent opportunity to Network with representatives of the European Commission, various research institutions and funding agencies, ethicists, lawyers and precision medicine professionals.

The EP PerMed Symposium on Ethical, Legal and Social Aspects (#ELSA) of #PersonalisedMedicine today addressed the main ethical challenges in personalised medicine research, with the aim of raising awareness and training researchers by addressing ELSA issues in personalised medicine from a macro approach (ethics of new technologies) to a specific approach (ethics, legal issues, privacy issues and artificial intelligence (#AI) in personalised medicine). Ethical principles in research are considered fundamental in the context of the European Union's Framework Programme for Research and Innovation Horizon Europe and are therefore mandatory for the research and innovation projects funded by EP PerMed. The event took place in a hybrid format with around 120 participants on site and online. A report on the symposium will be published in the coming weeks on the EP PerMed website. More: https://lnkd.in/e5cDb85J

🚀 Exciting milestone! We are thrilled to announce the launch of the "World Health Organization Guidance for Best Practices for Clinical Trials" and the upcoming #webinar. This guidance is designed to reinforce global standards in the organisation, design, conduct, analysis, and reporting of #ClinicalTrials. It was developed with support from the UK Department of Health and Social Care via the European & Developing Countries Clinical Trials Partnership. 📅 Join us for the launch webinar on 25th September 2024 13:00-14:30 CEST for a panel discussion moderated by Jeremy Farrar. Amongst other distinguished panelists, Michael Makanga will share insights on "What funders can do to enable improvements in clinical trials". Don't miss out on this critical conversation! Register for the event and check the launch website on the links below 👇 🔗https://lnkd.in/eY8HnWqm. 🔗 https://lnkd.in/e6EN4p3W -------- Vasee Moorthy Maria Dutarte John Amuasi Val Snewin Akbar Fotouhi Ann Meeker-O'Connell Africa CDC EU Science, Research and Innovation

📅 Deadline approaching❗ Registration for online participation at the EP PerMed Symposium on Ethical, Legal and Social Aspects (ELSA) of #PersonalisedMedicine will close in two days on 20 September! Agenda & Registration: https://lnkd.in/eDsyHyhH