Advancing pediatric rare disease research through collaboration
RareKids-CAN works alongside a national and international network of partners committed to improving pediatric rare disease research and clinical trials. By bringing together expertise across research, health care, patient advocacy, and clinical operations, we help strengthen collaboration and reduce barriers to advancing treatments for children and families.
Our network is built on partnerships, shared knowledge, and a collective commitment to improving outcomes for children living with rare diseases.
Host Institute
RareKids-CAN is hosted by the Maternal, Infant and Youth Research Network (MICYRN), that provides operational leadership, infrastructure, and administrative support.
Clinical Trial Unit Sites
Our network includes clinical trial units and research sites across Canada with expertise in pediatric research, clinical trial operations, and rare disease care. These sites help support trial delivery, collaboration, and access to research opportunities for children and families nationwide.
Patient Organizations
Patients and families are central to everything we do. RareKids-CAN collaborates with patient organizations and advocacy groups to support meaningful engagement, improve research participations, and ensure that patient and family perspectives are reflected throughout the research process.
- Cystic Fibrosis Canada
- Immunity Canada
- MS Canada
- Sumaira Foundation
- Cure SMA Canada
- Muscular Dystrophy Canada
- Canadian Alliance for Rare Disorders of the Skeleton (CARDS)
- CANadian Aortopathy and Connective Tissue Disorders Registry (CAN-ACT)
- Canadian Organization for Rare Disorders (CORD)
- Congenital Hyperinsulinism International
- KidsCAN
- Foundation for Prader-Willi Research (FPRW)
Research Networks
We work with Canadian research networks, institutions, and health care partners to strengthen collaboration, share expertise, and build capacity for pediatric rare disease clinical trials and research.
- Canadian Pediatric Endocrinology Group (CPEG)
- Canadian Society of Systemic Autoinflammatory Diseases (CanSSAiD)
- Network of Networks (N2)
- Stem Cell Network
- Clinical Immunology Network – Canada
- Canadian Consortium for Children’s Bone Health (CCCBH)
- Inform Rare
- Neuromuscular Disease Network for Canada (NMD4C)
- Care4Rare-Solve/ all for one connect
International Collaborations
Rare diseases do not stop at borders. RareKids-CAN collaborates with international organizations, networks, and research initiatives to support global knowledge sharing, innovation, and opportunities for collaboration in pediatric rare disease research.