RareKids-CAN:
Pediatric Rare Disease Clinical Trials and Treatment Network
Out of the 7,000 known rare diseases, only about 5% have specific treatments available. Patients and families often need to travel to other countries and pay out of pocket for experimental treatments. RareKids-CAN is working to change this by supporting national and international clinical trials. Our goal is to support groundbreaking researchs and advance access to therapies for children, adolescents, young adults, and their families here in Canada.
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Who We Are
RareKids-CAN is funded by the Canadian Institutes of Health Research Institute of Genetics, as part of the Government of Canada’s National Strategy for Drugs for Rare Diseases investment.
We collaborate with:
Patient and family partners
Patient organizations
Investigators and research networks
Industry partners
Our focus is on supporting the high quality design, and execution of pediatric rare disease clinical trials in Canada and enabling access to treatments.
Our 3 Priorities
Our Services
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• Pre award consultations
• Regulatory submission support
• Ethics submission
• Database services
• Registry concierge service -
• Advocacy toolkits
• Engagement support -
• Investigator and site identification
• Access to expertise and patient partner input
• Regulatory support services
Affiliated Institutions
We are partnered with 16 pediatric research institutions and their affiliated hospitals across Canada, uniquely positioning us to facilitate meaningful connections between investigators and collaborators. We have a database with over 180 investigators and experts from these institutions who are ready to collaborate on your project.
Featured Spotlight
PARTICIPATION OPPORTUNITY
Rare Disease Patient Experiences, Interests and Preferences in Pharmacology Education
August 27, 2025A study team at SickKids is inviting parents and children living with rare diseases to take part in a study aimed at improving how families learn about medications.
Learn moreGENERAL NEWS
Highlighting Youth Partner, Simone, for International Youth Day!
August 12, 2025Meet Simone – one of RareKids-CAN’s youth partners! An enthusiastic undergraduate student at the University of Toronto, Simone is currently pursuing a degree in Life Science with a focus on Neuroscience.
Learn moreGENERAL NEWS
Congratulations, Dr. Andrea Tricco and Registry Sub-Platform member Catherine Stratton, on their CIHR Project Grant!
August 6th, 2025We’re excited to share that a CIHR Project Grant has been awarded to support a new initiative focused on establishing recommendations for rare disease patient registries.
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