
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.
Patient Focused
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13th ISSAID Meeting
paris Paris, France13th Meeting of the International Society of Systemic Autoinflammatory Diseases (ISSAID), which will take place in Paris from April 8th to 10th, 2025, at the “Cité Internationale” - a magnificent haven of peace near many transport amenities where you will particularly enjoy the sumptuous Honorat lounge overlooking a lush green park. April in Paris offers […]
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RareKids-CAN Annual Conference
The mission of the RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network Strategic Planning Conference is to collaboratively shape the future of pediatric rare disease research and clinical trial capacity in Canada. By bringing together over 100 patient and family partners, researchers, sub-platform leaders, and key stakeholders, they aim to co-develop a shared vision […]
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RDI: Leveraging the EML for Access to Rare Disease Treatments
The WHO Essential Medicines List (EML) is a critical instrument for advancing Universal Health Coverage (UHC) by ensuring equitable access to essential medicines. However, its role in rare disease treatment remains under-recognized. This webinar will explore how the EML can serve as a powerful tool to improve access to treatments for persons living with a rare disease (PLWRD) at […]
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Thinking Outside of Your In Box: Innovative Fundraising Opportunities
Leadership in rare disease advocacy requires creativity and resourcefulness. This session highlights unconventional fundraising strategies and case studies of successful campaigns. Participants will discover how to secure funding through innovative approaches, such as partnering with non-traditional sponsors, and receive actionable tips to implement these ideas in their own organizations.
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Neuropsychiatry & Mental Health 2025
Theme: Innovations in Neuropsychiatry and Evolution in Medicines of Neurological Disorders for Better Mental Health.
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Limb-Girdle Muscular Dystrophy Masterclass
Are you involved in diagnosing or managing Limb-Girdle muscular dystrophy (LGMD)? This April 2025, join TREAT-NMD™ in Montreal, Canada, for an in-person educational event designed for healthcare professionals in the neuromuscular field.
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Lunch N’ Learn: Talking Research with Patient Partners
Join this virtual workshop on Zoom on April 24, 2025, at 12:00 p.m. (EST) to develop communication skills for engaging with patient partners in research. Hosted by the HBHL EDI Trainee Committee, the session features medical librarians and a patient advocate sharing insights on plain language and patient-oriented research. Presenters: Sabrina Burr, MISt - Librarian of the Neuro-Patient Resource Centre […]
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Navigating Conflict with Care: Building Stronger Patient Engagement Teams in Research
Conflict is a natural part of teamwork—but in family engagement in research, how we navigate it matters. Join them for a compassionate conversation on resolving conflicts in family engagement teams, fostering trust, and strengthening collaboration.
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Mitochondrial Transplantation and Next Generation Therapeutics Conference
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.
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Summit 2025: Ending The Diagnostic Odyssey
washington WA, United StatesA 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 […]
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!