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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 ”.
35 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
Calendar of Events
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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 efforts to modernize and streamline drug reimbursement reviews. |
3 events,
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Delivered by Prof. Kleopas Kleopa (Cyprus Institute of Neurology and Genetics (CING), Thu 29 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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Mark your calendar for Thursday, January 29, 2026, from 6:00–7:30 p.m. ET, and join Defeat Duchenne Canada online for an evening celebrating the incredible progress of their community and the promise of the future. |
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1 event,
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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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2 events,
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1st Zebra of the Month of Zebrier 2026 of the RQMO Speakers: - Dr. Roberta, La Piana, Assistant Professor, Department of Neurology and Neurosurgery, McGill University - Dr. Thomas Durcan, Associate Professor, Department of Neurology and Neurosurgery, McGill University
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Single-arm trials remain a cornerstone of rare disease research, but their limitations and complexities cannot be ignored. In the third webinar, experts Yulia Dyachkova (Merck Healthcare), Jenny Devenport (Roche), Cornelia Dunger-Baldauf (Novartis) abd Guillaume Canaud will lead a deep dive into the evolving role of SATs in drug development. The discussion will cover regulatory and […] |
2 events,
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In honour of Black History Month, D2R invites you to an interactive webinar on “Anti-Black Racism in Health Research.” This session will explore the history of slavery in Canada, trace the evolution of anti-Black racism within Canadian health research, and highlight practices and strategies to address and counter these challenges.
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Join RareKids-CAN for an in-depth discussion on the evolving role of health technology assessment and reimbursement policy in improving access to pediatric rare disease care. |
1 event,
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Speaker: Dr. André Megarbane, Professor, Department of Human Genetics, lebanese American University, Beirut, Lebanon |
1 event,
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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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3rd Zebinary of the Month of Zebrier 2026 Speaker: - David Cohen, Professor, Faculty of Health, Sorbonne University, Paris, France |
3 events,
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 include; disrupted clinical trial delivery, regulatory uncertainty, global access inequalities and shrinking public funding, they’ll tackle these themes with a holistic, solutions-driven approach and a […]
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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 evaluate engagement beyond process metrics, and what this means for future patient engagement practice and evaluation.
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The final webinar focuses on what truly matters: the patient. Rare disease trials often struggle to capture outcomes that reflect patient priorities but RealiseD is working to change that. Rudradev Sengupta, Senior Trial Design Lead at One2Treat, will present an approach that embeds patient voices into every stage of trial design and analysis. By using […] |
3 events,
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Speaker: - Jacques P. Tremblay, Ph.D, Full Professor, Department of Molecular Medicine, Faculty of Medicine, Université Laval
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You will learn: ➡️ To minimize or even Eliminate Taxes on your estate. ➡️ How to Change your Estate Plans in this virtual environment. ➡️ To Avoid Double Taxation on your “Red” retirement accounts. ➡️ To Bypass paying upfront Capital Gains Taxes when selling your investments. ➡️ To convert assets into an Income You Can’t […] |
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Speakers: - Christine Yergeau, Msc, RARE Network Manager. QC - Lilit Antonyan, Research Pillars Coordinator at RARe.qc |
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Held during Rare Disease Month, this annual virtual event brings together families, youth, and the broader childhood rheumatic disease community to make rare experiences visible—and to remind families that they are not alone. Through shared stories, trusted information, and meaningful connection, RareTalks offers support for every stage of the journey, from first symptoms to long-term care. |
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Speaker: - Josée Chénard, TS, PH.d, Professor, Department of Social Work, Université du Québec en Outaouais
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HTAi’s Rare Disease Interest Group will celebrate 2026 Rare Disease Day with a conversation on how global policy changes are reshaping HTA processes for rare disease technologies. The webinar aims to update the global HTA community on recent advances in rare disease policy, particularly following the adoption of the World Health Assembly (WHA) Resolution on […] |
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Placing brain health at the core of rare brain disease prevention and management, this event gathers multidisciplinary experts from research, clinical care, patient advocacy, and industry to share perspectives and priorities on the rare brain disease research, care, and policy space. The meeting will focus on reviewing key developments in regulatory frameworks and discussing strategies […]
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Speakers: - Kim Auclair, consultant, speaker and blogger - Elsie Côté, Founder and President of Sirote-moi |
1 event,
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Matchmaking for Rare Disease Diagnosis is a panel discussion and interactive Q&A with patient matchmaking pioneers, Dr. Nara Sobreira, Matthew Osmond, CGC, and Dr. Orion Buske. |
1 event,
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Speaker: - François Bernier, entrepreneur, strategist, co-founder of Horizon b2b |
2 events,
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ACCELERATED ACCESS TODAY, DEMONSTRATING VALUE FOR 2026 AND BEYOND This Rare Disease Day, join CORD for a 1-hour webinar marking the first 1.5 years of Canada’s Rare Disease Drug Strategy (RDDS). The session celebrates progress in accelerated access while focusing on what comes next: demonstrating value.
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This Rare Disease Day, Massey College is the Massey community to join us for a special Fireside Chat on an issue that touches more lives than many realize. Lindy Forte, Mai K., Catherine Stratton, MPH, and Ian Stedman will share brief opening reflections from their respective perspectives on rare diseases. Together, they’ll explore how we […] |
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On February 28th, from 10 a.m. to 4 p.m., we invite you to participate in the RQMO 2026 International Rare Disease Day. The event will be held in hybrid mode, meaning that it will be possible to attend in person or virtually. |
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