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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Scientists reading clinical results

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

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Data successfully saved and stored on Cloud

Data Safety Monitoring Board

Database Build and Management

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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

Research Participation Opportunities

May 26th, 2025

Looking to get involved in research? Explore current opportunities on our new ‘Participation Opportunities’ page.

Learn more

GENERAL NEWS

RareKids-CAN 2025 Conference Recap

April 22nd, 2025

Earlier this month, the RareKids-CAN community came together to connect, collaborate, and learn—both in person in Ottawa and virtually from coast to coast to coast and beyond!

Learn more

GENERAL NEWS

Celebrating Rare Disease Day 2025

March 28th, 2025

This 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.

Learn more