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 PKU community.
12 events found.
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.
Events
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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 in February 2026. This webinar will engage in a multistakeholder dialogue focusing on the necessary path forward to accelerate the implementation of the Resolution and […]
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CMT episode 2: Progress in genetic diagnosis for neuropathies
Delivered by Dr. Andrea Cortese (University College London, Department of Neuromuscular Diseases, UK), Thu 15 Jan 2026 at 16:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology.
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When Nutrient Sensing Goes Wrong: How Metabolic Signals Can Drive Epilepsy and Autism
4e épisode de la série de webinaires en collaboration avec Rare.qc et le RQMO. Titre complet : When Nutrient Sensing Goes Wrong: How Metabolic Signals Can Drive Epilepsy and Autism Paul A. Dutchak, Ph.D is an Associate Professor at Université Laval and Principal Investigator at the CERVO Brain Research Centre (Québec, Canada). His laboratory studies […]
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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 has worked in the MGH Leukodystrophy clinic since 2011, working with a multidisciplinary team caring for both pediatric and adult patients with leukodystrophy.
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Knowledge Sharing Sessions – Feasibility of a Home-Based Exergaming Intervention for Youth With Spinal Muscular Atrophy.
Dr. Geoff Frost will be leading NMD4C's first Physiatrist Community of Practice (CoP) Knowledge Sharing Session. He will present a recent article authored by Iraqi et al. on a work conducted in Canada by fellow NMD4C members: “Feasibility of a Home-Based Exergaming Intervention for Youth With Spinal Muscular Atrophy.” The session will take place on January […]
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RealiseD Webinar 2: Evidence Assessment Framework. A need to change mindset from developers, regulators and HTA
The second webinar turns the spotlight on one of the most critical issues in rare disease research: the generation and assessment of evidence. François Meyer, a leading consultant in health technology assessment, will examine why current frameworks often fail to deliver predictable and aligned outcomes, resulting in delays and inequalities in patient access. The session […]
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CMT episode 3: Bioarkers and outcome measures for clinical trial readiness in CMT
Delivered by Prof. Mary Reilly (University College London, Department of Neuromuscular Diseases, UK), Thu 22 Jan 2026 at 17:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology.
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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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CATALIS-Clinical Research 101: Webinar 1
Webinar 1 on January 22, 2026 from 6 pm to 6:30 pm
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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 in the coming weeks.
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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 ”.
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!