International Scientific Symposium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders

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The Ehlers-Danlos Society is organising the International Scientific Symposium on the Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD), a state-of-the-art meeting in which new research on clinical advances and the molecular and pathogenic mechanisms underlying EDS and related syndromes will be discussed. This hybrid event will take place in Rome, Italy (Fontana di Trevi Conference Centre)…

EMA webinar on repurposing of authorised medicines pilot programme

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In October 2021, the European Medicines Agency (EMA) and the Heads of Medicines Agencies (HMA) announced a pilot project to support the repurposing of medicines. To support not-for-profit organisations and academia ahead of the upcoming deadline for submission (February 28th), the EMA is hosting a « walk-in » clinic webinar on February 17th from 17.00 – 18.00 CET. The webinar will:…

Dravet Syndrome Foundation organises Scientific and Family Days 2022

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The Dravet Syndrome Foundation Spain (FSD), a non-profit organisation that promotes, encourages, and connects the world’s leading research centers for Dravet syndrome and related diseases, is announcing its upcoming conferences taking place in 2022, whose registration is now open at www.dravetconference.com. These in-person events will take place in Madrid, Spain over three days from March 31st – April 2nd. 1. Dravet Syndrome…

Dr. Anneliene Jonker (IRDiRC) interviewed for article on medical devices for rare diseases

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International Rare Diseases Research Consortium (IRDiRC) member Dr. Anneliene Jonker, Vice Chair of the Therapies Scientific Committee (TSC) of IRDiRC, has been interviewed extensively for an article published in the February 2022 issue of Medical Technology magazine. The article, titled “Medical devices for rare diseases: the unmet need”, presents the goals of the IRDiRC Working Group on MedTech for Rare Diseases, the…

EU-STANDS4PM publishes review article on computational modelling for personalised medicine

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EU-STANDS4PM, a European standardization framework for data integration and data-driven in silico models for personalised medicine, has published a review article on computational models for clinical applications in the Journal of Personalized Medicine. In the article, the authors discuss the most relevant computational models for personalised medicine in detail that can be considered as best-practice…

Press Release: EJP RD and C-Path to Expand Global Impact and Partnership

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PARIS, France and TUCSON, Ariz., U.S., February 1st, 2022: The European Joint Programme on Rare Diseases (EJP RD) announces a collaboration with the Critical Path Institute (C-Path), an independent global nonprofit organization, to advance technologies and methodologies that are fit for regulatory purposes to further global rare disease research and drug development. C-Path has a proven…