Accelerating hope for children with rare diseases in Canada
Approved treatments exist for fewer than 5% of rare diseases. RareKids-CAN is working to change that by advancing clinical trial readiness and expanding opportunities to receive cutting-edge therapies.
16
Affiliated pediatric research institutions across Canada
180+
Experts in pediatric research in Canada
16
Clinical Trial Navigators
40+
Patient & family partners
Who we work with
RareKids-CAN brings together researchers, health care teams, patients and families, and industry partners to simplify and streamline pediatric rare disease research in Canada.
Researchers
Connect with our national clinical trial infrastructure, expertise network, and shared resources to advance your pediatric rare disease clinical trial.
Access our inventory of pediatric rare disease protocols and searchable databases, rare disease research tools, and our free support services.
Biotech and Industry
Partner with our national network to accelerate pediatric rare disease clinical trials across Canada.
Access experienced investigators, trial ready sites, and a coordinated national expertise to streamline feasibility, site selection, and study start-up.
Patients and Families
Access trusted information and resources to help you navigate your rare disease research journey shouldn’t be difficult.
Explore patient registries, research opportunities, and find tools designed to support informed decisions for children and families at every stage.
1 in 12 Canadians are affected by a rare disease, and two-thirds of these diseases manifest in childhood.
Our databases support your research
Take a look through our databases to find rare disease registries, clinical trials, and research resources.
Patients, families, healthcare professionals and researchers
Researchers
Researchers
Patients, families, healthcare professionals and researchers
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.
Clinical Trial Navigators
Our 16 Clinical Trial Navigators are key connectors within the RareKids-CAN network. Embedded within our affiliated institutions across Canada, they bring incredible value as research managers and coordinators, to help connect their local investigators with clinical trial opportunities, foster collaboration, and advance pediatric rare disease research
Get involved
Advancing pediatric rare disease research takes collaboration. Whether you are a researcher, clinician, industry partner, patient, caregiver or advocate, there are many ways that you can contribute to RareKids-CAN and support research across Canada.
Partner with us
Collaborate with RareKids-CAN to help strengthen pediatric rare disease clinical trials, research infrastructure, and national connections across the research ecosystem.
Participate in a study
Learn about opportunities to participate in pediatric rare disease research in Canada and explore clinical trials that may be relevant to you or your child.
Join our expertise database
If you are an investigator or expert in clinical trials, we welcome you to share your expertise and interests to help support future research collaborations, initiatives, and opportunities across the RareKids-CAN network.
The latest news from RareKids-CAN
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Reflections from EURORDIS Open Academy: Learning, Partnership, and the Future of Rare Disease Engagement
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Key Takeaways from the American Society of Gene & Cell Therapy 2026
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Canadian National Mirror Group Contributes to International Discussion on Rare Disease Registries
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New Paper Provides Practical Guide to Cell and Gene Therapies in Pediatric Rare Disease Research
Stay up-to-date
Subscribe to the RareKids-CAN newsletter to get the latest news and pediatric rare disease updates from our network.