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
GENERAL NEWS
Celebrating Rare Disease Day 2025
March 28th, 2025This past Rare Disease Day on February 28, 2025, our team came together to raise awareness, share patient and family experiences, and celebrate the work we’ve done so far while acknowledging the work yet to come as a network.
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RareKids-CAN celebrates IHDCYH Talks competition winners
February 12th, 2025
Congratulations to network members Maureen Smith, Dr. Beth Potter and Dr. Lauren Kelly for receiving IHDCYH competition awards!
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MICYRN & ECRIN Sign Memorandum of Understanding
February 6th, 2025MICYRN (and by association RKC) officially signed an MoU with ECRIN, bringing us new opportunities for international collaborations.
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