IRDiRC Recognized Resources label is a quality indicator, based on a specific set of criteria, created to highlight key resources which, if used more broadly, would accelerate the pace of translating discoveries into clinical applications.Any resource compliant with the criteria may apply for the label. Selected platforms, tools, standards, and guidelines must be of […]
Clinical Trials Funded by Members
The list below represents the list of clinical trials funded by IRDiRC members. To access the list of clinical trials click on the name of the institution. These clinical trials are also accessible from the Orphanet website. They can be queried by disease/gene, substance/trade name, clinical trial category, institution/laboratory, professional, sponsor/funding body.
Research Projects Funded by Members
[toc] Number of New Research Projects Funded by IRDiRC Funding Bodies IRDiRC members include funding organizations (i.e., funding bodies, groups of funders (for small funders), companies) investing more than 10 million USD over 5 years in rare disease research. These organizations fund a number of research projects. The Scientific Secretariat collects data on […]
Calls of IRDiRC Member Organizations
[toc] IRDiRC does not currently provide research grants. Its funding members contribute through their own rare disease research efforts and release a number of funding opportunities focused on rare disease research that adhere to IRDiRC Policies and Guidelines. In addition, some members collaborate to release joint funding calls and support joint research projects. These funding […]
IRDiRC Publications & Recommendations
Scientific Publications 2024 Advancing diagnosis and research for rare genetic diseases in Indigenous peoples. Gareth Baynam, Daria Julkowska, Sarah Bowdin, et al. Nature Genetics, 2024. Access the paper here. Drug repurposing for rare: progress and opportunities for the rare disease community. Anneliene Hechtelt Jonker, Daniel O’Connor, Anna Maria Gerdina Pasmooij, et al. Frontiers in […]
Task Forces & Working Groups
Introduction The IRDiRC Task Forces are created to tackle specific topics within rare diseases research proposed by the Constituent and/or Scientific Committees and selected as prioritized actions by the Consortium Assembly and the Operating Committee.Each Task Force reviews current barriers to efficient and effective rare disease research, and proposes solutions through policy recommendations and/or technical […]
Scientific Committees
IRDiRC has four Scientific Committees: Diagnostics Scientific Committee (DSC) Interdisciplinary Scientific Committee (ISC) Therapies Scientific Committee (TSC) Regulatory Scientific Committee (RSC) Each Scientific Committee is composed of approximately 15 members with balanced expertise and representation from academia, patient organizations, diagnostics, pharmaceutical industry, and regulatory bodies. The Scientific Committees identify and propose actionable projects to advance […]
Member Organizations
IRDiRC members include: Funding organizations (i.e., public and private funding bodies, groups of funders) investing more than 10 million USD over 5 years in rare disease research Companies (i.e., Biotech, Pharma, MedTech, etc) investing more than 10 million USD over 5 years in rare disease research Umbrella patient advocacy organizations representing broad patients’ interests for […]
Governance
Organizational Structure of IRDiRC IRDiRC is governed through a Consortium Assembly, an Operating Committee, three Constituent Committees and four Scientific Committees, aided by ad hoc Task Forces and Working Groups. The Scientific Secretariat provides organizational and communications support. The composition of these bodies are described below. Consortium Assembly The IRDiRC Consortium Assembly is composed […]
People & Organization
IRDiRC members include: Funding organizations (i.e., funding bodies, groups of funders (for small funders), companies) investing more than 10 million USD over 5 years in rare disease research Umbrella patient advocacy organizations representing broad patients’ interests for all rare diseases in at least one country or larger area Please see the membership pages (Funders or […]