IRDiRC — International Rare Diseases Research Consortium
Overview
IRDiRC is an international coordinating consortium of research funders, patient advocacy organisations, and research institutions working to accelerate global rare disease research. Founded in 2011 through a joint initiative of the European Commission and the US National Institutes of Health, it brings together over 60 member organisations across more than 25 countries as of 2025. IRDiRC set a second goals period in 2017 targeting 1,000 new therapies for rare diseases and means to diagnose most rare diseases by 2027, building on a first period in which the goal to develop 200 new therapies was achieved. Its primary output is coordination, policy recommendations, and governance frameworks produced through task forces and scientific committees, not primary research data. It promotes data sharing and interoperability standards for rare disease research, including adoption of ORPHAcodes from Orphanet and Phenopackets from GA4GH for structured phenotype-genotype descriptions. IRDiRC coordinates with European biobanking infrastructure through BBMRI-ERIC and with national rare disease registries including BNDMR.
Connections
- relatedTo: Orphanet (promotes use of ORPHAcodes as a standard rare disease coding system)
- relatedTo: GA4GH (promotes adoption of Phenopackets for structured phenotype-genotype descriptions in rare disease research)
- relatedTo: BBMRI-ERIC (coordinates with European biobanking infrastructure on rare disease data standards)
- relatedTo: BNDMR (coordinates with French national rare disease registry)