On November 25-26, the Health Canada Relations and Advocacy Sub-Platform of RareKids-CAN and MICYRN, in partnership with the SickKids Child Health Policy Accelerator, gathered researchers in Ottawa to advocate for regulatory changes in pediatric clinical trials. Meetings with Health Canada leaders and over 250 staff emphasized the need for a regulatory exemption for off-label use of marketed Standard of Care therapies in pediatric trials. The proposal was well received, and engagement with the federal government will continue.

RareKids-CAN and the Maternal Infant Child and Youth Research Network (MICYRN) are proud to support the launch of the European Rare Disease Research Alliance (ERDERA) as a formal Associate Partner. In partnership with the Canadian Rare Disease Network (CRDN), RareKids-CAN co-leads the Canadian National Mirror Group (NMG), aligning Canada’s rare disease initiatives with global strategies. This collaboration will enhance international partnerships, advance research coordination, and improve outcomes for individuals with rare diseases.