ALS Disrupt
A bold new meeting designed to bring together global leaders in #ALS for open, timely, and collaborative discussions that move the field forward.
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.
Webinars
Events
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From Blueprint to Action: How We Can Advance Palliative Care in Canada Together
Access to hospice palliative care in Canada still varies widely, with barriers linked to geography, diagnosis, and social factors. The Blueprint for Action 2025–2030 outlines priorities to improve equitable, culturally safe care. This webinar introduces the roadmap and offers practical guidance on advocacy and government engagement to help individuals and organizations drive meaningful change.
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RareKids-CAN-Bill C-265 Webinar: Improving Access to Essential Medications in Canada
Join RareKids-CAN for a timely conversation with MP Marcus Powlowski (MP for Thunder Bay – Rainy River) alongside healthcare professionals and patient advocates from across Canada, on improving access to essential medications not currently available in the country.
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Newly Diagnosed with a Genetic Aortic Disorder: What You Need to Know
Led by patient advocates, Lindsey Rusche and Liz Martin, this educational webinar is designed specifically for individuals and families who have been newly diagnosed with a genetic aortic disorder. The goal of this session is to provide clear, reassuring, and evidence-based information to help patients better understand their diagnosis and feel supported as they begin […]
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ALS Canada: ALS Clinical Trials Unboxed
On Friday, May 15, 2026 at 12 p.m. ET, join ALS Canada for our next ALS Clinical Trials Unboxed webinar to learn more about ongoing ALS clinical trials.
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RQMO: Le grand pouvoir des petites populations
6e épisode de la série de webinaires RARE.QC-RQMO présenté par Simon Girard, Ph.D, Professeur en génétique humaine, Université du Québec à Chicoutimi et un de ses étudiants au doctorat en biologie, M. Gilles-Philippe Morin. Le titre de la présentation de M. Morin est : Déceler la structure fine de population du Saguenay–Lac-Saint-Jean par la génétique […]
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Rare Diseases International: A Catalyst for Global Health Transformation
Bringing together policymakers, patient advocates, industry leaders, researchers, and global health institutions, the event will explore how rare diseases can drive people-centered, equitable health systems.
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CRDN-RAREvolution Information Webinar
FeaturedJoin us for our information webinar on May 27th, 2026 at 12PM MST/ 2PM EST.
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Sickle Cell Awareness Group of Ontario: Learning for Life Webinar
Join SCAGO for an informative virtual session on Novel Therapies in Sickle Cell Disease Pain Management: What Patients and Families Should Know.
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Planning Orphan Device Development Using the GAITS Framework
This webinar kicks off a new joint EU4Health webinar series on paediatric and orphan devices! Three EU4Health projects, i4Kids4Rare, DeCODe, and OrphaDev4KIDS have joined forces to deliver a series of expert webinars on planning, regulation, and clinical pathways for paediatric and orphan devices.
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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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NMD4C and MDC: Neuromuscular Mystery Case Rounds
Join NMD4C and Muscular Dystrophy Canada at their next CPD-accredited webinar, “Neuromuscular Mystery Case Rounds,” on Tuesday, June 2nd, 2026 at 5:00 p.m. ET, with their speaker, Dr. Albert Yeung, Neuromuscular Clinical Fellow at the University of Alberta. This session will be chaired by Drs. Aaron Izenberg, Shafina Sachedina and Christen Shoesmith.
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!