Ottawa – In Canada, 14,000 children under the age of 15 die each year from a rare disease. 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.
That is why, 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.
The national 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. The federal government will continue to make investments like these to support Canadian researchers who are working hard to improve health outcomes people living in Canada and elsewhere in the world.
“The creation of this network supports our government’s commitment to improving the lives of all patients living with a rare disease. By bringing together rare disease pediatric community members from across Canada, modernized diagnosis and treatments will be made possible. Our government will support Canadian researchers as they continue to make remarkable contributions to health research to benefit not only Canadians, but rare disease patients around the world.” – Mark Holland, Minister of Health