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 make groundbreaking discoveries and advance treatments 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 design, development, management, and execution of pediatric rare disease clinical trials in Canada.
Our Services
We recognize that every organization and project is different. That’s why we offer flexible, tailored support at any stage of development to ensure meaningful progress in pediatric rare disease research. We offer a range of Academic Research Organization (ARO) services for investigators, biotech and industry sponsors across Canada.
Site and Investigator Identification
Expertise Consultation
Regulatory Submissions to Health Canada
Contract Facilitation
Quality Assurance and Clinical Trial Monitoring
Project Management
Data Safety Monitoring Board
Database Build and Management
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 150 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.
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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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