Join Northwell Health on April 27-29, 2025, at Hofstra University on Long Island (NY) for a unique forum for the presentation and discussion of new research developments in mitochondrial transfer and transplantation.

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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3 events,
Join Northwell Health on April 27-29, 2025, at Hofstra University on Long Island (NY) for a unique forum for the presentation and discussion of new research developments in mitochondrial transfer and transplantation.
A first-of-its kind collaborative event for Undiagnosed, Ultra-Rare & Rare disease industry, clinical and community leaders. The diagnostic odyssey for rare diseases is a significant challenge, often leaving patients and families lost in a maze of tests, misdiagnoses, missed opportunities to participate in clinical trials, and delayed treatment. Summit 2025 brings together a diverse group […]
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Join us on Monday, April 28, 2025, at The Westin Hotel in downtown Calgary (or virtually) for an inspiring afternoon dedicated to innovation, collaboration, and progress in rare disease research and care. This event will spotlight innovative advancements and inspiring stories from Canada’s rare disease community. Through engaging lightning talks and networking opportunities, you’ll connect […] |
6 events,
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Join the conversation about key ethical, equity and privacy challenges related to AI and health!
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Join HRDN conversation about key ethical, equity and privacy challenges related to AI and health!
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Learn how to create a more inclusive workplace for neurodivergent employees with our 6 principles! |
3 events,
MDF invites you to attend the Professional Track at the 2025 MDF Conference in Indianapolis, Indiana from May 1st to May 4th! Sometimes called the “DM family reunion” - the MDF Conference is an event to unite the DM community in our journey towards treatments and a cure for myotonic dystrophy (DM). This year's program […]
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Presenters: Thomas Qiao, MSc, Research Coordinator, Department of Psychiatry, University of Calgary Noah Furlani, MSc, Research Coordinator, Department of Psychiatry, University of Calgary Dr. Kara Murias, MD PhD FRCPC, Pediatric Neurologist, Alberta Children’s Hospital; Assistant Professor, Department of Pediatrics and Clinical Neuroscience, University of Calgary |
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Patients and family members affected by FSHD are invited to attend an event hosted by the FSHD Canada Foundation and the FSHD Society! The FSHD 360 Conference Ontario is an event where patients and family can meet leaders in FSHD research and hear the latest updates, including presentations from NMD4C investigators Dr Lawrence Korngut and Dr […]
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FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance to hear from the research and advocacy leaders in Ontario as well as from biopharmaceutical companies that are working on FSHD therapies. Get answers to your questions about your health, […] |
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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). |
1 event,
Join iDR25 – the international drug repurposing conference – to unlock the full potential of medicines by driving innovation for patient benefit. From cutting-edge AI approaches transforming drug discovery to exploring innovative business models and regulatory pathways for market access |
4 events,
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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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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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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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Hosted by the MGFA, this influential gathering of neuromuscular researchers and medical professionals is a prominent opportunity to present your work and hear from accomplished peers from around the world. We hope that you will be able to join us for this premier scientific gathering of global MG leaders. |
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🎤 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: ✅ Free online resources for families & program leaders ✅ 140+ inclusive physical activities ✅ Goal-setting & adaptation strategies ✅ […] |
2 events,
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RDI will be holding a side event at World Health Assembly 78 in Geneva. Join them as the community celebrates 10 years of progress and looks forward to 10 more years of redefining what's possible! |
1 event,
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Working closely with First Nations, Inuit and Métis 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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The event will now make a stop in Canada, in the picturesque and warm Saguenay—Lac-Saint-Jean region of the province of Quebec. A unique opportunity to network and share advances and initiatives in myotonic dystrophy research! Take advantage of this not-to-be-missed event! |
2 events,
This inaugural national conference brings together leading experts from Canada and beyond to explore the physiological and psychological complexities of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS). |
3 events,
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Take a Pain Check Foundation is thrilled to invite you to Unity Through Rheumatic Diseases, an in-person event dedicated to promoting collaboration and driving change in rheumatology. Join us on Saturday, May 31, 2025, from 8:00 AM to 5:00 PM EST at the InterContinental Toronto Centre (225 Front St W, Toronto, ON M5V 2X3) for a day of insightful discussions, […] |
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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!