RareKids-CAN

@rarekidscan.bsky.social

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RareKids-CAN is a diverse coalition of partners aimed at streamlining and accelerating rare disease clinical trials and access to innovative treatment for all patients and families in Canada. RareKids-CAN is funded by the CIHR.

"I see it as an honour to be able to directly help children suffering from rare diseases to get access to treatments in the form of trials which they normally would not get access to." - Daislyn Vidal Clinical Research Coordinator & RareKids-CAN Clinical Trial Navigator, University of Saskatchewan
Network Director, Breanne Stewart, and Project Manager, Catherine Strandt at ASGCT Annual Meeting 2026
June 2 | 5pm ET | Virtual From Evidence to Access: Do Lived and Clinical Experiences Shape HTA Decisions? Chair: Dr. Maryam Oskoui, Sub-platform Lead, RareKids-CAN Speakers: Homira Osman, Vice President of Research Public Policy & Programs, Muscular Dystrophy Canada Michelle Gibbens, Directory, Engagement, Canada's Drug Agency Whitney Ayoub, Executive Director, ImmUnity Canada
White text on green background reads April 29th Undiagnosed Day 2026. An cartoon illustration of a doctor and child are next to the text. The child sits on a hospital bed as the doctor examines him. Floating around them are illustrations of paper work, DNA, hearts, and a magnifying glass
Text in yellow on purple background that reads "Write to your MP in suport of Bill C-265" Photo on the right of Canada's Parliment buildings centred on the Peace Tower and Library
Join Us May 14th Bill C-265: Improving Access to Essential Medications in Canada, featuring MP Marcus Powlowski
IMPaCT RareKids-CAN logos Text reads Congratulations to Busisiwe Zapparoli and Wallace Wee, IMPaCT-RareKids-CAN trainess! Photo of Wallace Wee an Asian man with glasses and a black shirt with red and white striped tie, Photo of Busisiwee Zapparoli a Black woman with long braids and a stripped blouse
"I look forward to gaining valuable insights and sharing key takeaways with RareKids-CAN to contribute to national ATMP trial readiness efforts" - Cara Grobbecker, Clinical Trial Navigator, RareKids-CAN, Research Coodrinator, Children's Hospital London Health Science Centre
World Health Day 2026 text over an illustration of two doctors and one clinician.
Access Pathways for Therapies Unfit for Commercialization Advance initiatives that support the development and implementation of therapies that are unlikely to be commercially viable but offer meaningful benefits for rare disease patients and their families.
National Expertise Catalogue: Develop and maintain a centralized database of methodological and RD clinical experts to assist with protocol development and site and investigator identification.
Academic Leadership, Guidance & Training: Foster excellence in PRDCTs design, conduct and execution by supporting, creating, expanding, and disseminating new knowledge. Centralized Supports for PRDCTs: Through centralized and subsidized services, we reduce costs, improve efficiency, and accelerate trial initiation. ATMPs Training Material & Standard Operating Procedures (SOPs): Develop materials to support the safe and effective handling and administration of ATMPs. Network of Pediatric ATMPs Clinical Trial and Delivery-Ready Units: Support the development of a Community of Practice who share a common interest in the ATMPs clinical trial and delivery space. Innovative Models : Advance decentralized and patient-centered clinical trial models to enhance accessibility, equity, and participation in PRDCTs.
Rare Disease Day 2026 : Raising awarness for the 200 million children impacted by a rare disease
RareKids-CAN Rare Methods Workshop Series: Eliciting Prior Distributions for Rare Disease Clinical Trials March 11 | 1pm EST | Virtual | Speaker: Arlene Jiang, Member of the RareKids-CAN Statistical Methods Sub-Platform, Biostatistical Analyst, EMBaRC Lab, SickKids
Text on light purple background reads December 17, 2025, 1 to 2pm ET. Rare Methods Workshop Series, Biostatistical Methods for External Controls in Pediatric Rare Disease Clinical Trials. Register Today!