Rare Disease Day Celebrations 2026
On February 28th, the RareKids-CAN community came together in a powerful show of collaboration and progress to celebrate Rare Disease Day 2026. Across the country, partners and affiliated sites hosted a vibrant mix of in-person and virtual events — each one amplifying the voices, stories, and breakthroughs that define the rare disease community.
The celebration created space for meaningful dialogue. Sara Pott, co-lead of the RareKids-CAN Patient & Family Engagement Sub-Platform, and Michelle Paquette, Coordinator of the RareKids-CAN Indigeneity Sub-Platform, hosted a virtual session for patients and families impacted by rare disease. They asked participants what is currently missing or needs attention in the pediatric rare disease space, and participants emphasized the importance of strong care coordination, particularly during the transition to adulthood. The conversation also raised questions about how clearer clinical guidelines for rare diseases might help support more patient- and family-centred clinical trial design.
Hospital and partner organizations marked the day with inspiring initiatives:
Ana Acosta and Dr. Gibson discuss research from the Gibson Lab during their Rare Disease Day presentation. (photo courtesy of BCCH)
BC Children’s Hospital hosted a dynamic, day-long event that brought researchers together to showcase their contributions to rare disease research, foster new collaborations, and connect with resources to accelerate their work. Organized by Henry Okpaladigbo, RareKids-CAN Clinical Trial Navigator (CTN), and Shane Feinstein, Clinical Research Quality Assurance Associate BC Children’s Hospital Research Institute, the event marked the first time Rare Disease Day was celebrated at the institution – a significant milestone.
Mattison Stojcic from the Turvey Lab at BC Children’s Hospital Reasearch Institute. (photo courtesy of BCCH)
The Rare Disease Research Symposium saw fantastic turnout both in person and online, bringing together trainees and investigators from across institutions. Among the featured researchers was Dr. Danielle Baribeau who received database development and regulatory support from RareKids-CAN for her single-patient pediatric rare disease clinical trial.
Dr. Elodie Portales-Casamar (third from left), RareKids-CAN Real World Data sub-platform co-lead, participapted in a Rare Disease Day panel hosted by RQMO. (photo courtesy of RQMO)
Quebec Coalition of Orphan Diseases (RQMO) led celebrations under the theme “The human being beyond the rare disease.” They highlighted the powerful message that “behind every diagnosis is a story, strengths, passions, and a life that goes far beyond the disease”. As part of the program, a dynamic discussion panel on “Resources and support for rare diseases” brought together voices from the Rare Disease community’, including a presentation by Dr. Elodie Portales-Casamar, lead of the Real World Data sub-platform from RareKids-CAN. The discussion aimed to highlight the various initiatives and resources that support patients and families living with a rare disease, explaining their mission, how they provide meaningful assistance, and how families can get involved.
Members of the London Health Science Centre team pose for photos during their Rare Disease Day awareness celebration. ((photo courtesy of LHSC).
London Health Science Centre welcomed patients, families, and researchers for a community-focused event that gained broader attention through coverage on CTV News. A standout feature of the event was the creative arts and crafts activities led by RareKids-CAN CTN Cara Grobbecker and her team. These interactive stations created a welcoming and inclusive environment, helping to spark meaningful conversations between researchers, patients, and families. The activities not only encouraged engagement but also provided a powerful, accessible way for children and families. The activities not only encouraged children and families to express their experiences and connect with the rare disease community.
SickKids brought the day to life with an engaging on-site event, highlighted by a dynamic speaker series exploring the fascinating world of genetics. Dr. Gregory Costain, a physician-scientist specializing in the diagnosis and management of rare genetic conditions in children, was among the featured speakers. His talk helped attendees better understand the complexities and advancements in the rare genetic field.
University of Alberta showcased cutting-edge research through its Department of Genetics, where experts shared exciting advancements shaping the future of rare disease discovery and care.
Members of the University of Laval team during their Rare Disease Day celebration.
University of Laval spotlighted those working in their Pediatric Cystic Fibrosis Interdisciplinary Clinic at the Centre mère-enfant Soliel, celebrating the impact of interdisciplinary care in improving patient outcomes.
RareKids-CAN Clinical Trial Navigator, Daislyn Vidal, prepares to great parents and rare disease community members at the University of Saskatchewan on Rare Disease Day 2026.
University of Saskatchewan celebrated Rare Disease Day with an engaging booth, hosted by RareKids-CAN Clinical Trial Navigator Daislyn Vidal, that connected with parents and community members. The initiative made a meaningful impact in raising awareness, particularly through strong engagement with children, who enjoyed colouring in the Rare Disease Book designed by LHSC’s Carlee Stokes.
In addition, University of Saskatchewan investigators Dr. Sarah Tehseen and Dr. Katie Felton, who are leading a rare disease hematology clinical trial in the province, helped raise awareness through a podcast interview released in honour of Rare Disease Day. The episode provides insight into their work the realities of conducting clinical trials for rare childhood diseases.
Rare Disease Day 2026 was not only a moment to celebrate progress, but also a reminder of the work ahead. For the RareKids-CAN community — researchers, clinicians, patients, and families alike — every day is Rare Disease Day. Together, we continue to advance research, strengthen connections, and raise awareness across Canada.