IRDiRC Nomination Call: Therapies Scientific Committee

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The International Rare Diseases Research Consortium (IRDiRC) has three Scientific Committees, one each for Diagnostics, Therapies and Interdisciplinary aspects of rare diseases research. The Therapies Scientific Committee (TSC) is a multi-stakeholder, multi-disciplinary group of experts in medical research and therapy development in rare diseases. Specifically, the TSC is devoted to pursuing the therapeutic development of IRDiRC, supporting…

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NIH Virtual Roundtable on Gene-Targeted Therapies: Early Diagnosis and Equitable Delivery

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NCATS along with NICHD and NINDS of the National Institutes of Health (NIH) are co-hosting a virtual NIH roundtable meeting on the theme of Gene-Targeted Therapies: Early Diagnosis and Equitable Delivery. The virtual roundtable will take place over three Thursday evenings: June 3rd, 10th and 17th from 18.00 – 22.30 CET. This meeting will bring together scientists, clinicians, therapeutics…

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European Commission launches public consultation on the Orphan and Paediatric Regulations

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As part of its review of the Orphan and Paediatric Regulations announced in 2020, the European Commission (EC) has launched a public consultation for stakeholders such as patient organisations, healthcare professionals and providers, researchers, academics and representatives of the pharmaceutical industry, as well as members of the general public. Interested parties are invited to share…

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STARS Consortium Training Content on Regulatory Science for Academic Researchers

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In February 2021, the Coordination and Support Action on Strengthening Training of Academia in Regulatory Science (CSA STARS) Consortium organized a four-day online training course entitled « The Winding Road from a Brilliant Idea to Drug Approval » aimed at providing academic researchers with essential regulatory knowledge, case examples, insights into the regulatory system, as well as direct interaction and…

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FAIRplus Project Webinar: Discovering the FAIR Cookbook

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The FAIRplus project, which aims to develop tools and guidelines for making life science data FAIR (Findable, Accessible, Interoperable, Reusable) is organizing a webinar entitled « Discovering the FAIR Cookbook ». The webinar will take place on May 26, 2021 from 14.00 – 15.00 CET. The event will include a presentation of the FAIR Cookbook by the resource’s developers and project coordinator…

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16th International Congress on Neuromuscular Diseases

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The Neuromuscular Disorders Applied Research Group of the World Federation of Neurology is organizing its 16th Annual Congress on Neuromuscular Diseases. The fully virtual conference will take place on May 21-22 and 28-29, 2021. The detailed program is available here, with a focus on the following themes: May 21: Muscle Disorders May 22: Peripheral Neuropathies May 28: Neuromuscular…

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ProDGNE Kick-Off Webinar

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The ProDGNE consortium, funded as part of the EJP RD’s Joint Transnational Call 2020 « Pre-Clinical Research to Develop Effective Therapies for Rare Diseases », announces its ProDGNE Kick-Off Webinar. The webinar will take place on June 03, 2021 from 18.00 – 19.00 CET. The webinar will present ProDGNE, a 3-year transnational pre-clinical research project that brings together patients and researchers from…

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Care-for-Rare Foundation’s Science Award 2021

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The Care-for-Rare Foundation at Dr. von Hauner Children’s Hospital, Munich has launched the Care-for-Rare Science Award 2021, a grant of €50,000 aimed at providing scientists the chance to initiate a basic or clinical research project in the field of rare diseases. The call for applications is currently open and will close on July 31, 2021. The award…

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PedCRIN Final Event: Fostering International Paediatric Clinical Research

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Paediatric Clinical Research Infrastructure Network (PedCRIN), a project of ECRIN, announces its PedCRIN Final Event on “Fostering International Paediatric Clinical Research” and invites everyone involved in paediatric clinical trials to join the event. The webinar will take place on June 16, 2021 from 09.30 – 13.00 CET. During the 3.5-hour interactive session focused on the challenges of paediatric multinational clinical trials,…

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