World Duchenne Organization is thrilled to announce that the applications for Duchenne Centers Accreditation are now open. The Accredited Duchenne Centers Program is designed to achieve worldwide uniform and up-to-date care for everyone living with Duchenne muscular dystrophy. Accredited Duchenne Centers provide comprehensive care according to the international care considerations and consensus guidelines. The program…
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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…
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The Interdisciplinary Scientific Committee (ISC) is a multi-stakeholder, multi-disciplinary group of experts in rare diseases medical research with a strong expertise in data sharing, registries, biobanks and natural history studies. ISC has one opening for a new member with experience in rare diseases data sharing, ontologies, natural history, biobanking and registries. Interested candidates are invited…
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AFM-Telethon is pleased to announce the launch of its first international call for proposals for Translational Research Projects on « A single therapeutic product for several mitochondrial disorders ». The MitoNice Congress, organized in September 2022 by the AFM-Telethon along with the 7 th International Myology Congress, highlighted that mitochondrial medicine has moved from the…
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It’s Rare Disease Day! For the occasion, EJP RD launched a video focusing on the connection between the expertise and knowledge from the Rare Diseases Community of a specific country with the EJP RD countries. The less-than-3min video explains the Rare Diseases National Mirror Groups (NMGs) and their objectives, as well as a few testimonies…
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ERN eUROGEN and ERNICA are organising a 1-hour webinar entitled « Primary Obstructive Megaureter (POM): Predictors of Success and Failure after Balloon Dilatation » on February 22nd, 2023 at 18:00 CET. Registration is open here In this webinar aimed at healthcare professionals, Dr Sonia Pérez-Bertólez and Dr Oriol Martín-Solé, Consultants in the Department of Paediatric Urology at Hospital Sant Joan de Déu Barcelona (ES), will…
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European Institute of Innovation and Technology (EIT) Health’s Catapult Videos On-Demand platform has been launched! The EIT Health Catapult programme showcases carefully selected ventures from all over Europe and actively looking for Seed and Series A investments. The free-of-charge platform which we are bringing to you today, allows to meet the founders behind the best…
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The World Duchenne Organization is pleased to announce that thanks to a collaborative initiative driven by their technical partners, FAIR Data Systems in Madrid, a FAIR Training Program will be available online to all those interested in understanding the value and future impact of the FAIR Guiding Principles. This is the outcome of the latest…
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The European Rare Disease Research Coordination and Support Action consortium (ERICA) is organising the WP4 Clinical Trial Support webinar “Essential requirements before thinking about a clinical trial” in collaboration with EJP RD and ERN BOND. This webinar will provide you with an overview of what should be done before starting a clinical trial in a study site.…
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Rare Disease International (RDI) has opened the event platform for #SeeRare – the global Rare Disease Day event organized in partnership with the international Rare Disease Day campaign. #SeeRare will take place online on 28 February 2023, at 14.00 CET | 08.00 EST. The event aims to give greater visibility to rare disease groups around…
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