The next installment of the “Challenges in Pediatric Neuroscience Research Webinar Series”, will be on May 12th, 2023 from 2-3 PM EST. In this episode of our ongoing series, we will be speaking with Dr. Heather Hazlett, a pediatric neuropsychologist at the University of North Carolina at Chapel Hill, about remote neuropsychological assessments. This type […]
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Prof. Guillaume Canaud (Necker Hospital for Children, AP-HP, France) offered a great presentation on “Targeted therapy for patients with PIK3CA-related overgrowth spectrum“ at the RE(ACT) Congress in Berlin (Germany). Check out his impressions on the IRDiRC Conference x RE(ACT) Congress at the following link: here.
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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 […]
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The European Partnership on transforming health and care systems (THCS), a Cofund action under the Horizon Europe Programme designed to support coordinated national and regional research and innovation programmes along with capacity building, networking, dissemination and other key activities to support health and care systems transformation, will launch its first Joint Transnational Call (entitled “Healthcare […]
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Solve-RD, a research project funded by the European Commission for five years (2018-2022), having the ambitious goals set out by the International Rare Diseases Research Consortium (IRDiRC) to deliver diagnostic tests for most rare diseases by 2020, invites all its partners to attend the Solve-RD Final Meeting 2023 in Prague (Czech Republic) or online. The […]
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The next EATRIS-Plus Summer School in Personalised Medicine will take place in person on 17-20 April 2023 in Lisbon, Portugal. EATRIS-Plus Summer School in Personalised Medicine is organised within the framework of EATRIS-Plus Project, which is a flagship initiative in personalised medicine, coordinated by EATRIS-ERIC. The overarching topic of the summer school is multimodal biomarkers and diagnostics. […]
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Save the date for the 9th Rare Disease Summer School organized by ITINERARE, a recently established University Research Priority Program of the University of Zurich focusing on “Innovative Therapies in Rare Diseases”. The Summer School will take place at the Kartause Ittingen, Warth (Canton Thurgau) close to Zurich from July 4th to 7th, 2023. The program includes lectures by national and international rare disease experts on topics […]
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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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The U.S. Food and Drug Administration (FDA) announced a new funding opportunity for the FDA Rare Neurodegenerative Disease Grant Program to support efficient natural history studies and/or biomarker studies that fill unmet needs for rare neurodegenerative diseases for children and adults. Through the support of prospective natural history and/or biomarker studies with high quality and interpretable data elements, FDA […]
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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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