Watch the insightful interview with Veronica Popa, a patient expert, as she delves into the subject of patient engagement in pre-clinical therapy development, the challenges, and the impact of EJP RD funding.The video is available hereIn this interview, she explores examples and discusses the challenges hindering patient participation in research projects.More information on EJP RD…
We are thrilled to invite you to the Final EJP RD Conference. Scheduled to take place from May 27th to May 28th, 2024 at the Hotel Excelsior Bari, Via G. Petroni, 15, Bari / Puglia, Italy, this conference is set to bring together leading experts, professionals, and enthusiasts from around the world. Please note: the…
We are delighted to announce the successful outcome of the EJP RD-EFPIA Joint Advanced Webinar on Real-World Data, Machine Learning, and Deep Analytics in rare diseases, which accumulated enthusiastic participation from approximately 300 attendees.For those unable to partake in the live event, we are pleased to inform you that the recorded sessions, featuring keynote speaker…
The Rare Disease Moonshot welcomes the European Joint Programme on Rare Diseases (EJP RD) as its new member. This collaboration will expand the network and the reach of the Rare Disease Moonshot, maximise the impact of already funded programmes and help identification of best platforms for future public private collaboration. Rare Disease Moonshot’s mission: Scaling up…
The latest IRDiRC paper, « Drug Repurposing for Rare: Progress and Opportunities for the Rare Disease Community » has been published in Frontiers in Medicine. The paper is available here. This open-access publication, reflecting the collaborative efforts of the IRDiRC Drug Repurposing Task Force and the IRDiRC Therapies Scientific Committee over the past 1.5 years, is a…
The European Joint Programme on Rare Diseases is organizing the training webinar: « Real-World data, Machine learning and Deep analytics in rare diseases: Regulatory grade data collection for marketing authorization submissions – what is buzz, what is realistic? » that will be held online on 26 January 2024 from 2:00pm to 4:00pm CET. Registration is open here…
EURORDIS-Rare Diseases Europe proudly announces the appointment of Virginie Bros-Facer, PhD, as its new Chief Executive Officer, starting March 2024. Virginie brings an extensive professional background in rare diseases, scientific research, and patient advocacy, combined with personal insights from her niece’s experience with Congenital Disorders of Glycosylation. EJP RD is proud to have collaborated with…
The ERICA & EJP RD Joint Conference was held on November 21st, 2023, in Amsterdam. This event aimed to unite stakeholders in European Reference Networks (ERNs) and Rare Disease (RD) Research. It brought together medical professionals, researchers, patient advocates, policymakers, and industry representatives interested in improving care and advancing research for rare diseases. Recordings of…
As part of the training activities proposed by EJP RD, an 3-day training course on “Training on strategies to foster solutions of undiagnosed rare disease cases” is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners. The training will be held in Rome, Italy on 13-15 March 2023. Registration is open until 14 January 2024.…
A funded networking event, the first Argonaute Syndrome Science & Family conference, has been organized to bring together patient families, researchers and clinicians of the AGO1 and AGO2 communities to facilitate the sharing of knowledge. This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity. A report has been prepared to understand more about…