12 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.
Patient Focused
Events
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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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RareKids-CAN-From Evidence to Access: Do Lived and Clinical Experiences Shape HTA Decisions?
This conversation will explore how patient and clinician perspectives are integrated into HTA evidence frameworks, how these insights influence decision-making in practice, and where opportunities remain to build more responsive and inclusive systems for rare disease communities.
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Canadian Genomics Innovation Showcase
Join the Consulate General of Canada in Boston for an exclusive program showcasing the strength and momentum of Canada’s genomics and life sciences ecosystems.
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Brain-Heart Interconnectome (BHI) State of the Science Summit
The summit is an international conference meant to highlight the latest science at the crossroads of brain and heart health, showcasing innovation and state-of-the-art research.
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Muscular Dystrophy Canada- Working Together to Build E-Learning in Rare Neuromuscular Diseases: Lessons from Arthrogryposis
Muscular Dystrophy Canada is excited to host a webinar on building e-learning in rare neuromuscular diseases. The objectives of this session are as follows: Recognize the key principles of knowledge co-development, including respectful partnerships between people with arthrogryposis multiplex congenita (AMC), families, clinicians, researchers, and organizations. Understand the value of multidisciplinary teams that include people […]
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Building on Progress: Charting the Future of Canada’s Rare Disease Strategy
Leading experts and advocates will convene to discuss the critical insights, challenges, and opportunities in advancing Canada's National Rare Disease Strategy. Drawing upon key findings from a recent national study, panelists will delve into the economic burden, the profound impact of delayed diagnosis on patient journeys, and the imperative for improved pathways, access, and research. […]
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RareKids-CAN Advanced Therapy Medicinal Products (ATMPs) series: ATMP Webinar: A Practical Primer for Clinical Coordinators, Nurses & Pharmacists
Designed for clinical coordinators, nurses, pharmacists, and research staff working in pediatric rare disease trials, this introductory session will provide a practical overview of: 🔹 Gene therapies, cell therapies, and antisense oligonucleotides (ASOs) 🔹 How ATMPs differ from traditional therapies 🔹 Key operational considerations for clinical teams 🔹 Strategies for explaining ATMPs in clear, accessible […]
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Rare Diseases International-Innovative Models Reshaping Access to Diagnosis, Treatment and Care – Practical examples and global case studies
Scientific and medical advances in rare diseases continue to accelerate — but equitable access to diagnosis, treatment, and care remains out of reach for millions of people living with a rare disease. This webinar offers a practical look at how innovative financing models can help close these gaps. The session will explore a range of […]
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4th Edition of the Sickle Cell Awareness Day Education Conference
The Sickle Cell Disease Association of Canada (SCDAC), in partnership with the Interdisciplinary Centre for Black Health (ICBH), is bringing the sickle cell community together at the University of Ottawa for a one-day gathering of learning, collaboration and action. This conference brings together patients, families, healthcare professionals, researchers, advocates, educators and caregivers.
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