
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.
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A Conversation About Patient Partner Outsider Syndrome
Patient/caregiver partnership in health research has evolved substantially since the launch of Canada’s Strategy for Patient-Oriented Research (SPOR) over a decade ago. However, findings from the Patient Advisors Network (PAN) "Reimagining the Research Landscape" report, commissioned by CIHR in 2024 for the SPOR Refresh, revealed that patient/caregiver partners often feel like outsiders in the research […]
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2nd Canadian Symposium on Neurofibromatosis
This Symposium is aimed at the patients and families, as well as clinicians and health professionals (doctors, nurses, researchers).
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Aging Out: Transition of care for children with rare neurodevelopmental disorders
Approximately one in 12 Canadians are affected by a rare disorder and two thirds of them are children, according to the Canadian Organization for Rare Disorders (CORD). Due to the low number of individual cases, qualified specialists are hard to find. After years of assembling a trusted pediatric care team, parents are often faced with […]
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RareKids-CAN Coffee Chat: Digital Storytelling with Krystle Schofield
Join other parents, caregivers, and individuals impacted by rare diagnosis and rare disease on October 16 at 8 P.M. EST. and learn about digital storytelling. Learn from Krystle Schofield, a RareKids-CAN parent partner, B.C. mom, digital storytelling facilitator + photographer.
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RQMO 2025 Education Day
Under the theme "Rare Diseases: Let's Break Isolation Together!", this event aims to build bridges between those who live the daily reality of rare diseases and those who accompany and care for them.
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International Neurology Conference 2025 | Mental Health Conference, Thailand
Neurology & Mental Health conference 2025 is set to be held on the 18th and 19th of October 2025, in Bangkok, Thailand in hybrid mode, allowing everyone to gain knowledge and providing a platform for discussing the latest advancements in treatments and techniques, future and present challenges, and sharing invaluable experiences in Neurology and allied disciplines. […]
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KTDRR’s 2025 Virtual Knowledge Translation Conference
This conference will look at different ways to make knowledge translation (KT) more effective and impactful. They seek presentations that will discuss how to measure the success of KT efforts, including involving users early on, working with people with disabilities, and customizing products and outreach to meet user needs. They'll also look for presentations that […]
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Building Bridges: Advancing Collaborative Pediatric Palliative Care
This pediatric palliative care symposium is for health care professionals interested in increasing their knowledge and skill in working with children with serious illness and their families. The goal is to share research and clinical experiences that broaden the perspectives and collaborative efforts to enhance the care delivery in hospital, home and hospice. Pediatric-focused clinician’s […]
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The World Orphan Drug Congress
The World Orphan Drug Congress is the largest and most established orphan drug & rare disease meeting of its kind across the globe. From cell and gene therapy, genetic testing, and market access, to real world evidence, this one meeting covers the whole orphan drugs value chain where science, government and manufacturers all come together […]
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Easing Pain, Advancing Care: A New Pathway for Children with Severe Neurological Impairments
This webinar will provide an overview of the multi-phased project, from clinical trial to implementation. It will highlight the clinical complexity of assessing pain and irritability; the project’s relevance and impact for clinicians, children with health complexity, and their families; as well as key lessons for patient-oriented research and implementation science.
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Taking multiple medications? 5 questions to ask
In recognition of Canadian Patient Safety Week 2025 (October 27-31), join Dr. Emily McDonald — a physician specializing in patient safety and Director of the Canadian Medication Appropriateness and Deprescribing Network — for a live, interactive webinar. Learn essential questions to ask to ensure all your medications are still necessary and helping you.
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!