IRDiRC has four Scientific Committees: Diagnostics, Therapies, Interdisciplinary, Regulatory. The Interdisciplinary Scientific Committee (ISC) is a multi-stakeholder, multi-disciplinary group of experts working on rare disease (RD) data sharing, ontologies, natural history, biobanks, registries, ethical and societal aspects of rare diseases. ISC would like to broaden the committee membership, to represent the worldwide rare diseases community in its […]
Read MoreWe are delighted to announce that IRDiRC Chair, Dr. David Pearce, will be speaking at the World Orphan Drug Congress USA this April, in Boston, MA, USA. The World Orphan Drug Congress brings together leading pharmaceutical and biotech companies, government and regulatory bodies, patient advocacy organizations, payers, and investors. The congress serves as a platform […]
Read MoreHosted by the BLACKSWAN Foundation, the International Rare Diseases Research Consortium (IRDiRC) and the European Rare Diseases Research Alliance (ERDERA), the RE(ACT) Congress & IRDiRC Conference offers a unique opportunity to connect face-to-face with our community and take part in a truly collaborative environment. Top Highlights: – Participate in cutting-edge research and policy discussions– Network […]
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A new IRDiRC paper on “Global health for rare diseases through primary care”, the work of the IRDiRC Primary Care Task Force, is now available open access in the The Lancet Global Health: https://lnkd.in/e_6_Rczr. The Task Force brought together a multi-stakeholder group of experts to assess the priority research areas in primary care. “Family medicine […]
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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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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 […]
Read MoreIRDiRC 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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A roundtable of EU and national policymakers, industry experts and patients will gather together to discuss the best approach to define unmet medical needs and Belgium’s multi-criteria approach. Around 36 million Europeans suffer from rare diseases and 95% of these diseases lack a specific treatment. Moreover, medicine development is lagging due to a risky and […]
Read MoreThe latest IRDiRC paper, “Drug Repurposing for Rare: Progress and Opportunities for the Rare Disease Community” has been published in Frontiers in Medicine. The paper is available here. This open-access publication, reflecting the collaborative efforts of the IRDiRC Drug Repurposing Task Force and the IRDiRC Therapies Scientific Committee over the past 1.5 years, is a […]
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Have a look at the latest video from the IRDiRC Consortium Assembly Meeting hosted on 3-4 October in Montréal (Canada) and dive into insightful snippets from different committees discussions! IRDiRC Consortium Assembly members had a chance to provide live updates on the activities developed within their committees and offered an insight on the priorities for […]
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