The Foundation for Rare Diseases (France) has launched a series of calls for proposals: Call for projects with ASL-HSP – “Research on hereditary spastic paraplegia”; Joint call for proposals with AFAF – “Research on Friedreich’s ataxia”; Call for projects – “Human and Social Sciences & Rare Diseases”; Call for projects with Vaincre La Mucoviscidose – […]
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The US Food and Drug Administration (FDA) published a new grant call, on Use of Digital Health Technologies in Clinical Investigations to Support Drug and Biological Product Development (U01) Clinical Trials Optional. The purpose of this notice of funding opportunity (NOFO) is to address topics related to the use of digital health technologies (DHTs) for […]
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A new network of Western Australian and international rare disease experts is being formed to develop precision medicines for the trickiest – and sometimes undiagnosed – cases across our hospital system. Affecting around 500,000 children in Australia, rare diseases are the biggest killer of children in developed countries with 95% of the approximately 7,000 known rare […]
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As the DNA Day is approaching on April 25th, to celebrate the 10th year anniversary of the Organization for Rare Diseases India (ORDI), an inaugural “ORDI Rare Star Awards” will be launched. These awards aim to honor and celebrate individuals who have made outstanding contributions in various categories related to rare diseases. Take some time to […]
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The RARE Drug Development Symposium, hosted by Global Genes and the Orphan Disease Center of the University of Pennsylvania, equips advocates with the knowledge, skills and connections they need to advance therapy development for their communities. This year’s theme is Innovative Ideas from Next Generation Change-Makers.The Symposium is planned to take place on April 29th-May […]
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The International Rare Diseases Research Consortium’s (IRDiRC) Regulatory Scientific Committee (RSC) has two openings for new members who are from the following regions: Africa, Australasia or South America. Apply before April 30, 2024. IRDiRC has 4 Scientific Committees, one each for the Diagnostics, Therapies, Interdisciplinary, and Regulatory aspects of rare diseases research. The Regulatory Scientific […]
Read MoreThe U.S. Food and Drug Administration (FDA) announces a new funding opportunity on “Natural History, Clinical Outcome Assessment, and Biomarker Studies of Rare Neurodegenerative Diseases (U01) Clinical Trials Optional”. The purpose of this funding opportunity announcement (FOA) is to support efficient natural history studies alone or in conjunction with the development and validation of clinical […]
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IRDiRC Functional Analysis Task Force recently convened for a dynamic 1.5-day workshop in Paris!🇫🇷 Members of the task force from all over the world came together and discussed methodologies and strategies to advance functional analysis for rare diseases. With collaborative spirit at the forefront, the task force members worked on putting together a manuscript on […]
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IRDiRC’s Interdisciplinary Scientific Committee (ISC) is looking for new members to join forces for exciting projects! Four positions will be available starting May, and the committee is looking for experts with different backgrounds, ideally based in Middle East, Africa, North or South America: Phenotyping, Ontology and/or Digital Health expertise Patient Advocacy experience Policy and/or Legal […]
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The Rare Disease Moonshot coalition encourages the rare disease research community to seize the opportunity presented by the Innovative Health Initiative’s call for proposal on Biomarkers, in alignment with the Research Needs Recommendations on Diagnosis In line with its mission of facilitating public private collaborations to address rare disease research “white spots”, the members of […]
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