Only 8 days to go until the World Orphan Drug Congress USA 2024 in Boston (MA, USA, date: April 23-25). The WODC USA presents a golden opportunity to showcase the impactful work we’re doing and explore how collaborative efforts are shaping the future of rare disease research. Reserve your spot at the globally defining event […]
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“My care team consists of over 30 healthcare professionals and I can’t recall even one time where one of them asked me about my mental health” (60 y.o. female patient). Alexion is partnered with Thomas Jefferson University to assess and address mental health among Neuromyelitis Optica Spectrum Disorder (NMOSD) patients. Phase 1 of the partnership was a research study titled The […]
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The Congressionally Directed Medical Research Programs (CDMRP) announces new FY24 Research Funding Opportunities spanning the research spectrum from mechanistic research to clinical trials and that are now available in Rare Disease research areas. More information: https://cdmrp.health.mil/funding/default. All organizations, institutions and companies, both international and domestic, are encouraged to apply.
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Just less than a month until the World Orphan Drug Congress in Boston! We are delighted to announce that IRDiRC is a proud partner and exhibitor at the World Orphan Drug Congress USA, taking place on April 23-25, 2024 in Boston (MA, USA). Don’t miss out IRDiRC Chair, Dr. David Pearce’s presentation of the “International […]
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Just less than a month from the start of the RARE Drug Development Symposium, an event co-hosted by Global Genes and Orphan Disease Center of the University of Pennsylvania. The Symposium 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 […]
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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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