Events
Welcome to our Events Calendar! Stay up-to-date with the latest happenings in the rare disease community in Canada and beyond. From webinar and conferences to workshops and other events, our calendar is your one-stop destination for all rare disease-related happenings. Explore upcoming events, mark your calendar, and join as we work together to make a difference in the lives of those affected by rare diseases.
Watch our walkthrough videos in English and French for guidance navigating the calendar HERE.Â
Virtual
Events
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Palliative Care in Chorea and Huntington’s Disease
Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).
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TruePKU Meeting
Mark your calendar for May 8, 2025, for the TruePKU meeting – a first-of-its-kind opportunity for members of the PKU community to share their experiences, needs, and treatment priorities directly with the U.S. Food and Drug Administration, life science companies with active PKU programs, researchers, and healthcare professionals.
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PxP-Upcoming webinar: Growing your influence and a patient partner
Join PxP for an engaging webinar hosted in collaboration with the Patient Engagement Research Ambassadors at the Institute of Musculoskeletal Health and Arthritis.
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The Canadian Friedreich Ataxia Journey
Muscular Dystrophy Canada recognizes World Friedreich Ataxia Awareness Day on May 17th 2025. Join them as they share their learnings from their recent Friedreich Ataxia journey mapping project!
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KidsAction Coaching: Community physical activity programs tailored for you!
🎤 Dr. Stephanie Glegg—a pediatric occupational therapist, researcher, and proud parent of a child with neurodiversity—will share how KidsAction Coaching supports children with exceptionalities to thrive in community-based physical activity programs. 🌍 You’ll learn about: âś… Free online resources for families & program leaders âś… 140+ inclusive physical activities âś… Goal-setting & adaptation strategies âś… […]
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Indigenous Data Governance Principles & New Approaches to Race-Related Data
Working closely with First Nations, Inuit and MĂ©tis partners as well as urban Indigenous health service providers, ICES has developed unique partnerships that include data governance and data sharing agreements. This work, supported by the Indigenous Partnerships, Data and Analytics department at ICES, enables Indigenous-driven analyses using ICES data. In this session, Dominique Legacy and […]
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D2R Scholar Awards Info Session
Have questions about the D2R Scholar Award? Join their online info session On May 28th from12:30-1:30pm to learn more!
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Share your Event
Do you have an upcoming event, webinar, or conference relevant to the rare disease community in Canada? We’d love to feature it on this page!
Help us expand our calendar and ensure that rare disease happenings are accessible to all. Submit your event details
HERE!