MICYRN Secures $20 Million Grant from CIHR for a Pediatric Rare Disease Clinical Trials and Treatment Network

MICYRN is thrilled to announce its success in securing a $20 million grant from CIHR Institute of Genetics to support the develop and execution of RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network. Under the leadership of MICYRN’s Scientific Director, and Nominated Principal Applicant, Dr. Thierry Lacaze-Masmonteil, RareKids-CAN is a transformative initiative set to revolutionize the landscape of rare disease research and treatment for children and their families in Canada and beyond.

At the core of RareKids-CAN is a coalition of diverse national and international experts including patient/family partners and patient organizations pooling their collective knowledge and experience in the pediatric rare disease community. Leveraging the strengths of MICYRN and its 17 maternal/child health research institutions, aimed at streamlining complex, pediatric, multi-center, multi-jurisdictional clinical trials, RareKids-CAN is primed for swift and effective operationalization.

RareKids-CAN aims to establish a robust platform in Canada to support pediatric rare disease clinical trials, providing essential infrastructure and resources. It seeks to enhance capacity through comprehensive training and mentorship opportunities, attract international trials and investments, foster inclusivity, and improve accessibility. The network prioritizes data collection and analysis to inform decision-making, while also supporting increased submissions for Health Canada authorization, ensuring timely access to innovative therapies for those impacted by rare diseases.

Quote from Dr. Thierry Lacaze-Masmonteil:

“Initiatives like RareKids-CAN, and others funded through the Canada’s National Strategy for Drugs for Rare Diseases, will be laying the groundwork for Canada to become a global leader in rare disease research and innovation, driving positive change for patients and families worldwide.”