GEREMY (EU project)

Yesterday, EUPATI ensured the coordination of the inaugural meeting of the Multistakeholder Advisory Committee (MAC) for the GEREMY (EU project). 💡 This entity will: ✅ Offer advice/constructive feedback and provide the patient perspective on all aspects of the project, such as the social embedding elements (WP5) as well as the review of guidelines and outputs of the project (WP6 - Preparation for clinical trials and other regulatory aspects) ✅ Raise Consortium Members’ awareness about meaningful patient engagement and its implementing measures on a regular basis This is an innovative approach for patient’s involvement within a very promising project! Since 2023 EUPATI is actively involved in the EU Project “GEREMY”. The Consortium is led by the Netherlands Heart Institute. The project aims to develop a novel approach which aims to deliver the first cardiac Gene Therapy for treatment of rare inherited forms of Arrhythmogenic cardiomyopathy.   EUPATI is supporting the Consortium on different levels, in particular: ✅ Ensure a patient-centred approach ✅Train and guide Consortium members about patient engagement in clinical development ✅Contribute to communication and dissemination activities #GEREMYProject #EUPATI #Collaboration #PatientEngagement

GEREMY Project - EUPATI in Utrecht for a patient engagement workshop 🇳🇱 📖    On 8th of April, EUPATI and other consortium partners got together in Utrecht for a two-day meeting hosted by the Netherlands Heart Institute. On the first day EUPATI with the collaboration of KU Leuven and Foundation Genetic Heart Disease PLN coordinated a training on how to create effective and meaningful patient engagement in clinical trials.      The focus of the training was to give basic knowledge about patient involvement, with an introduction to standards, best practices and ethical implications. A mix of both practical and classroom learning on how the different partners can work with patients throughout the project.   📚    The methodology for patient involvement has been built on EUPATI's extensive experience in patient engagement training along with a framework co-created by KU Leuven. Inês Alves and Vasiliki Mollaki guided the consortium members through the contents of the training.     We are proud to have delivered this workshop and for the continued cooperation within the GEREMY (EU project). 🤝    #GEREMYProject #EUPATI #Collaboration #PatientEngagementTraining #PLN #PKP2

🌟 Inspiring day at the GEREMY (EU project) Consortium Meeting at Netherlands Heart Institute in Utrecht.   The GEREMY project aims to develop Gene Therapy for the treatment of rare inherited Arrhythmogenic CardioMyopathy. This four-year project is funded by the European Health and Digital Executive Agency (HaDEA) and being conducted by a consortium of international partners KNAW - Koninklijke Nederlandse Akademie van Wetenschappen, UMCG, Klinikum rechts der Isar, University of Eastern Finland, EUPATI, Stichting Genetische Hartspierziekte PLN, KU Leuven, Kapadi and Netherlands Heart Institute. 🧬🫀   During the gathering J. Peter van Tintelen presented interesting findings concerning PKP2- and PLN in arrhythmogenic cardiomyopathy. Valuable information about the ethics of all steps required to develop gene editing approaches for inherited cardiomyopathies was given by Rieke van der Graaf. In addition, project insights were shared with the consortium by Niels Grote Beverborg, Eirini Kyriakopoulou, Theodor Boc, Vijayanand Rajendran, Pascal Borry, Phaedra Locquet, Enrico Tricanico, Peter Glijnis, and Valerio Del Vescovo about amongst others human in vitro disease models for the proper assessment of therapeutic interventions, gene therapy approaches for PKP2- and PLN related cardiomyopathy, in vivo validation of gene therapy in large animal models, ethical embedding of gene therapy implementation, and preparation for clinical trials. 💡   📈 We're making incredible progress in our journey to find the cure for rare inherited Arrhythmogenic Cardiomyopathy.   A big thanks to all the consortium members and their invaluable efforts. Together, we're shaping a future where rare cardiac diseases are no longer barriers to health and wellbeing. Let's collaborate and innovate. 🌍💙   🖥️ Follow us on LinkedIn and visit our project website to stay updated: https://lnkd.in/eq8C6tZc #GEREMY #GT #CM ##PLN #PKP2 Principal investigators: Pieter Doevendans and Eva van Rooij