
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.
Caregiver
Events
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CanPKU+: Advocacy in Action Update Sessions
Join the Advocacy in Action Update Sessions with John Adams in order to hear updates on various campaigns and what needs to be done to move things forward for the […]
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Rare Disease Internation-Moving the WHA Resolution on Rare Diseases Forward: From Promise to Action
Join RDI for this public webinar where they will discuss the current status of the WHA Resolution implementation, as they approach the World Health Organization Executive Board meeting taking place […]
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ULF Webinar: The Guardianship Transition: Minor Child to Legal Adult
Catherine (Catie) Becker is a Pediatric Nurse Practitioner at Massachusetts General Hospital (MGH). Catie received her master’s degree in Pediatric Acute/Chronic Advanced Practice Nursing from the University of Pennsylvania. She […]
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ERN-EuroBloodNet-Session 1: Strong at Any Age – Redefining Frailty Together
EuroBloodNet Topic on Focus: Ageing with a Bleeding Disorder"! This educational program is coordinated by ERN-EuroBloodNet together with the umbrella patient organisation EHC - European Haemophilia Consortium, represented by ePAG advocate Marius Tanase.
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Healthy Living and Aortopathy
Save the date for your upcoming webinar with Dr. Nathaniel Moulson, focused on exercise. This webinar will take place on January 22, 2026 at 7:00pm, registration details to be released […]
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PiPER Community of Practice for 2026
Save the date on *January 28th 2026* from 12-1 pm for a dynamic session titled “Lessons Learned by a Research Team New to Engaging PLEX in Randomized Controlled Trials ”.
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Canada’s Drug Agency-Preconsultation Webinar: Improvements to the Drug Reimbursement Review Process
Join CDA's preconsultation webinar on proposed improvements and upcoming procedural changes to our drug reimbursement review process. You will hear from their senior leaders how these plans will advance our […]
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Sickle Cell Awareness Group of Ontario (SCAGO) Learning for Life – Clinical Trials 101 What Every Patient Should Know Before Enrolling
Considering a clinical trial? Join SCAGO for an informative virtual session designed to help patients and caregivers understand the process, benefits, and important considerations before enrolling.
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OSSU World Café Conversations Series:”Find and Seek: Conversations on Matching Researchers and Lived Experience Partners”
OSSU World Café Conversations series with Maureen Smith🇨🇦, Aleisha F. and supported by Ontario SPOR SUPPORT Unit (OSSU): "Find and Seek: Conversations on Matching Researchers and Lived Experience Partners"
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8th TREAT-NMD® International Conference – Lisbon, 2026
Join TREAT-NMD at this vital, in-person gathering where patients, clinicians, researchers, industry, and regulators come together to tackle the biggest challenges in neuromuscular treatment development, diagnosis and care. Topics will […]
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Community Engagement Series Event: From Intent to Impact: Evaluating Patient Engagement Within a Rare Disease Pediatric Network
Join the upcoming Community Engagement Series event: From Intent to Impact: Evaluating Patient Engagement Within a Rare Disease Pediatric Network. Hear from Maureen Smith🇨🇦 and Beth Potter about how to […]
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!