The International Rare Diseases Research Consortium (IRDiRC) was launched in 2011 to advance rare diseases research worldwide. It unites national and international governmental and non-profit funding bodies, companies (including pharmaceutical and biotech enterprises), umbrella patient advocacy organizations, and scientific researchers to promote international collaboration and contribute towards IRDiRC objectives. Importantly, the coverage of the Consortium […]
IRDiRC Recognized Resources
Disclaimer: Please note that the IRDiRC Recognized Resources label is not an indicator of ranking of one platform, tool, standard, or guideline against other similar products. FDA disclaimer: FDA participates as a member of IRDiRC’s Committees as a part of the Agency’s efforts to advance the evaluation and development of products (drugs, biologics, devices, or […]
Telethon Foundation, Italy
2018 A novel approach to the understanding and treatment of Hutchinson-Gilford Progeria Syndrome A silk-based bone marrow model to predict individual response to old and new drugs for increasing platelet count in inherited thrombocytopenias Contribution of lipids and their oxidized metabolites on Arrhythmogenic Cardiomyopathy pathogenesis Development of Exon Specific U1 snRNA-based therapy for Familial Dysautonomia […]
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIH), USA
2016 2017 ELASTIN; ELASTIC FIBERS & MICROFIBRILS GORDON RESEARCH CONFERENCE & GORDON RESEARCH SEMINAR(website) A PHASE I STUDY OF THE SAFETY OF AAV2/8 LSPHGAA IN LATE-ONSET POMPE DISEASE(website) ACCESSORY MEMBRANE AND INTRACELLULAR MEDIATORS IN BONE CELL MECHANOTRANSDUCTION(website) ADDRESSING CRITICAL KNOWLEDGE GAPS IN EARLY DIFFUSE SCLERODERMA TRIAL DESIGN(website) CELLULAR IMMUNOTHERAPY FOR SSC(website) CHARACTERIZING THE TAKAYASU ARTERITIS […]
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NIH), USA
2015 A new strategy to identify the genetic causes of isolated CDH Advanced neuroimaging in pediatric spinal cord injury Application of an efficient drug repurposing platform to identify treatments for Cornelia de Lange syndrome Brain and behavior in individuals with intersex conditions Combination strategies to enhance therapy for ph-like b-all Decidual T cells in immune-mediated […]
Archives IRDiRC in the news
[toc] 2017 December 19, 2017, The international rare diseases research consortium: policies and guidelines (OrphaNews) December 19, 2017, Results of what matters to rare disease patients: IRDiRC task force on patient-centered outcome measures (OrphaNews) November 8, 2017, Patient-Centered Outcome Measures (Rare Disease Report) November 6, 2017, Patient Perspective Is Central to Research in Rare Diseases, […]
International Consortium of Human Phenotype Terminologies (ICHPT)
Objectives The objective of the International Consortium of Human Phenotype Terminologies (ICHPT) is to provide the community with standards to be used to achieve interoperability between databases, in particular to allow the linking of phenotype and genotype databases for rare diseases. These tools are critical to facilitate interpretation of genomic variants as well as high-throughput […]
Constituent Committees
IRDiRC has three Constituent Committees: Funders Constituent Committee (FCC) Companies Constituent Committee (CCC) Patient Advocates Constituent Committee (PACC) Each Constituent Committee is composed of IRDiRC members who are identified as part of that constituency (e.g., industry-based IRDiRC members participate in the Companies Constituent Committee). The Constituent Committees act as coordinating bodies of each respective constituent […]
FAQ
On this page, IRDiRC aims to provide the answers to the most frequently asked questions. Does IRDiRC provide research grants? 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 […]
Become a Funders Member (including Companies)
The International Rare Diseases Research Consortium (IRDiRC) was launched in 2011 to accelerate medical breakthroughs for people affected by rare diseases. It establishes a network of research funders – national and international governmental and non-profit funding bodies, as well as pharmaceutical and biotech companies – each investing a minimum of 10 million USD over 5 […]