Ontario Rare Action Group Information Meeting
Join the Ontario Rare Action Group information meeting April 21, 2026. They will be talking to you about what they've been up to the last month and how the community is continuing to grow.

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.
Join the Ontario Rare Action Group information meeting April 21, 2026. They will be talking to you about what they've been up to the last month and how the community is continuing to grow.
In this panel discussion and interactive Q & A with Dr. Colleen Campbell, Andrea Spencer, MBA, CHE, CMP (Prosci), Megan Trinkle-Knotts, and host DNA Today's Kira Dineen, MS, LCGC, CG(ASCP)CM, genetic counselling directors, hospital consultants, and business case experts will address how to build compelling, evidence-backed business cases.
How can innovative financing approaches improve equitable access to diagnosis, treatment, and care for people living with rare diseases? Join RDI-International for a new webinar series bringing together health economists, policymakers, patient advocates, and payers. Through a multistakeholder dialogue, this series will examine key financing gaps and barriers to access, map these challenges to relevant innovative […]
A bold new meeting designed to bring together global leaders in #ALS for open, timely, and collaborative discussions that move the field forward.
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.
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.
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 […]
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.
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 […]
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.
Join us for our information webinar on May 27th, 2026 at 12PM MST/ 2PM EST.
Join SCAGO for an informative virtual session on Novel Therapies in Sickle Cell Disease Pain Management: What Patients and Families Should Know.
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!
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