IRDiRC — International Rare Diseases Research Consortium
Overview
IRDiRC is an international consortium of research funders, patient advocacy organisations, and research institutions coordinating global investment in 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 23 countries. 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 and significant progress was made toward diagnosing most rare diseases. 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
- Recognized resource: Orphanet
- Partners with: GA4GH, BBMRI-ERIC