International Rare Diseases Research Consortium sets new research goals for 2017‑2027 with CIHR support

The International Rare Diseases Research Consortium (IRDiRC), which represents a collaboration of CIHR and Genome Canada with other international public and private funding agencies, patient advocacy groups, and scientific researchers, is pleased to announce three new goals [ PDF (294 KB) - external link ] that will improve diagnosis, care, and available therapy for patients who live with rare diseases. IRDiRC’s goals will be achieved over the next 10 years by helping these patients get diagnosed properly in the space of a year, fostering the discovery of 1,000 new therapies for rare diseases, and developing new methodologies that will assess the impact of diagnoses and therapies.

In 2011, when IRDiRC was founded, CIHR and Genome Canada jointly committed $25 million to rare diseases research. This helped the consortium develop 200 new rare disease therapies and has nearly provided the means to diagnose most rare diseases – both far sooner than expected. The most notable research funded by CIHR Institutes, Genome Canada and other partners include: FORGE Canada and Care4Rare, the Rare Diseases Models and Mechanisms Network, Can-SHARE, E-Rare ERANet; and nine projects funded by CIHR through the 2012-17 CIHR Rare Diseases Emerging Teams competition.

CIHR’s Institute of Genetics has provided additional funds in the field of rare diseases as part of Genome Canada’s 2017 Large-Scale Applied Research Competition in Genomics and Precision Health.

Dr. Paul Lasko, Scientific Director of CIHR Institute of Genetics, chaired IRDiRC’s Executive Committee from 2012‑15. Dr. Kym Boycott, a CIHR-funded clinical geneticist from the Children’s Hospital of Eastern Ontario, has chaired IRDiRC’s Scientific Committee on Diagnostics since 2012.

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