In Canada, 14,000 children under the age of 15 years die from a rare disease every year. With more than 7,000 known rare diseases, it is essential for researchers from across the country to work together to improve the health outcomes of all children and teens living with a rare disease.

Earlier this year, the Honourable Mark Holland, Minister of Health, announced the Government of Canada is providing $20 million over five years to Dr. Thierry Lacaze-Masmonteil and the Maternal Infant Child and Youth Research Network (MICYRN) team, to create RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network.

This national Network will include several researchers from the Children’s Hospital Research Institute of Manitoba (CHRIM) which will be the Manitoba site-lead for the network. CHRIM Principal Investigators include Drs. Lisa Knisley, Terry Klassen, and Lauren Kelly alongside Co-Investigators Drs. Cheryl Rockman-Greenburg and Kelly Russell, and Ms. Lise Bourrier from the Research Support Unit within CHRIM.

“For the past 45 years, as a medical doctor caring for children with rare genetic disorders, I have witnessed firsthand the toll these disorders have on the kids and their caregivers,” said Dr. Cheryl Rockman-Greenberg, CHRIM Researcher and Distinguished Professor in the Department of Pediatrics and Child Health at the University of Manitoba. “This team grant creating a clinical trials and treatment network across Canada will accelerate moving research discoveries directly into patient care. As a collaborator on this grant, I pledge to ensure that our Manitoba patients will benefit from this national initiative, can participate in new clinical trials, and will benefit from new discoveries and novel treatment approaches.”

This network will foster collaboration among researchers, patients, caregivers, health care providers, and policy makers; streamline clinical research; and support national and international clinical trials to advance discoveries, enable better prevention, diagnosis, and treatments, to improve health outcomes for children and adolescents affected by rare diseases.

This investment was funded through the Canadian Institutes of Health Research Rare Disease Research Initiative, one of many initiatives funded through the Government of Canada’s National Strategy for Drugs for Rare Diseases.