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.
rare disease
Events
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Advancing Innovation in Rare Disease Research
Join researchers, clinicians, and industry leaders to discuss real-world research breakthroughs, novel #ClinicalTrial designs, and how NORD's Rare Disease Centers of Excellence are leading collaborative efforts in #RareDisease innovation.
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Community Conversation: The Living Rare Study
Join NORD on Thursday, June 12 at 4 p.m. ET for a virtual conversation about the #LivingRareStudy. This session will guide you through joining the first large-scale study in the U.S. focused on tracking the real-life experiences of individuals and caregivers impacted by #RareDiseases, including how to create an #IAMRARE account, review the consent form, […]
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The Cambridge Rare Disease Showcase
This annual event celebrates the innovative work and powerful stories emerging from the rare disease community – uniting patient groups, researchers, clinicians, industry professionals, and more from across the UK and beyond.
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WHA Resolution Coalition Webinar: Turning the WHA Resolution on Rare Diseases into Action
This Coalition webinar will further discuss the formalization of the Coalition as well as the updates and next steps in the implementation of the WHA Resolution on Rare Diseases and the development of the Global Action Plan.
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Undiagnosed Hackathon 2025
350 million people live with an undiagnosed disease worldwide. Genome sequencing can provide answers for 40% of the People Living With Undiagnosed Disease (PLWUD) but around 60% still don’t receive a diagnosis. The purpose of the Undiagnosed Hackathon is trying to find new ways and collaborations to solve the undiagnosed diseases, that can’t be solved […]
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Advancing Rare Disease Healthcare: Spotlighting the Economic and Health System Burden of Disease
Please join this 1.5-hour live virtual meeting to hear esteemed faculty describe the global economic impact of rare diseases on patients and healthcare systems. Expert community advocates will also share their practical experience of advancing patients’ needs with key stakeholders. Panel discussion and audience questions will consider how to have meaningful impact in your country […]
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ITINERARE Symposium 2025
The programme features experts from a variety of fields, ranging from basic and translational research to clinical application and the ethical, social and legal aspects of rare disease research.
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ECRD: Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases
The ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future.
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Global Genes: RARE Drug Development Symposium
Join Global Genes virtually from September 9 – 11, 2026 and access high-impact sessions directly from your home or office. What’s included in the Live Stream: 2 Fireside Chats 6 General Sessions Keynote Talks Pitch Perfect Session Connect with advocates, researchers, and leaders shaping the future of rare drug development.
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RareKids-CAN Coffee Chat
Join other parents, caregivers, and individuals impacted by paediatric rare diagnosis and rare disease on Zoom for casual conversation. Two different times are available to accommodate time zones and schedules. You’re welcome for all or some of our hour together. Reach out to Sara at rkengage@mcmaster.ca for any questions.
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!