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…
Call for abstracts MARFANS, the French patient association for Marfan and related syndromes, is pleased to announce its first scientific and prospective meeting, Marfans 2035, on April 5th, 2024 which aims to learn about the main research directions in Marfan and related syndromes in the next 10 years, to exchange with researchers and clinicians, and…
The 12th edition of the European Conference on Rare Diseases and Orphan Products (ECRD), for which EJP RD is a partner, will take place on 15-16 May 2024, both online and in Brussels! It will be held as an official event under the auspices of the Belgian EU Council Presidency. ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe, aimed at identifying…
The European Medicines Agency (EMA) is set to host an event, the « Multistakeholder Workshop on Patient Registries » on February 12-13, 2024. This two-day hybrid workshop promises to delve into the intricacies of patient registries, offering a unique platform for regulators, registry holders, industry professionals, and a broad spectrum of stakeholders to engage in meaningful discussions.…
The World Duchenne Organization is organising the Duchenne Care Conference 2023. This online conference is taking place on June 7 and 8 from 15:00 – 18:00 CEST. This conference provides a unique opportunity for healthcare professionals and patient organizations around the world to connect and learn from the latest insights on Duchenne care in a…
We empowered a community that deserves to be heard. #RAREvolution Berlin, Germany – 24 March 2023. The seventh edition of the RE(ACT) Congress and the fifth edition of the IRDiRC Conference were held jointly in-person in Berlin (Germany) from 15-18 March 2023. The event was organized by the BLACKSWAN Foundation in collaboration with the International…
The 3rd International Conference on Rare Diseases organized by Rare Diseases Greece (RDG), “95” Rare Alliance Greece and Boussias and supported by EJP RD took place on February 28 & March 1, 2023. The presentations are now available here: https://www.rarediseases-conference.com/history/presentations-2023/ Following the success of the previous two years and having advanced the policy agenda on…
In the context of EJP RD’s ERN Workshops, a workshop entitled “Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach” is being organized by Dr Marco Vitelarro. The in-person event will take place on 22-23 May 2023 at Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, in Milano, Italy. Registration is open here, and closes on March 7th. This workshop is addressed…
The 4th eNMD conference will be held on 19-21 October 2023 in Munich. Visit the event’s website to get updated on information that will be incoming: https://enmd-neuromuscular.eu
The registration for the Third International Summit on Human Genome Editing is now open. The event will take place on 6-8 March 2023 at the Francis Crick Institute, London UK. Register for free here The Third International Summit on Human Genome Editing will take place on 6-8 March 2023 at the Francis Crick Institute, London…