Networking Support Scheme (NSS) event: European Dravet Syndrome Advanced Therapies Meeting (EDSAT)

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A funded networking event titled « European Dravet Syndrome Advanced Therapies Meeting (EDSAT) » is being organised so that scientists can share first-hand information about their most recent advances in advanced therapies and Dravet syndrome research. In addition, attendees will learn from and discuss with guest industry regulatory and clinical experts in product and clinical development. This event has…

Training for patient representatives and advocates on leadership and communication skills

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As part of the training activities proposed by EJP RD, an international course entitled « Training for patient representatives and advocates on leadership and communication skills » is a 2-day training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, open to patient representatives involved in the 24 European Reference Networks (ERNs), including members of the European Patients…

International Summer School 2022: Rare Disease Registries and FAIRification of Data

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As part of the training activities proposed by EJP RD, the International Summer School on Rare Disease Registries and FAIRification of Data is a 5-day training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, aimed at the international research community, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients’ representatives.…

ERN Workshop: Translational research on bone impairment in rare diseases

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In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Translational research on bone impairment in rare diseases” aimed at giving an update on translational research on bone impairment in rare diseases and bringing together experts and trainees to facilitate collaborations is being organised by Justine Bacchetta of the Faculty of Medicine of Lyon. The in-person event will take place over…

Rare Diseases Research (RDR) Challenge #1: Digital Tools for Rare Disease (DT4RD)

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EJP RD’s innovative Rare Diseases Research (RDR) Challenges call in partnership with Fondation Maladies Rare aims at facilitating and funding collaboration between industry, academia, SMEs, and patient organisations to solve specific research challenges in rare diseases. The first challenge issued under the RDR call was for the development of a non-invasive tool for measuring rare disease…

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…