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 […]

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 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 […]
FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a […]
In anticipation of Global ALS Awareness Day on June 21, join ALS Canada’s CEO Tammy Moore and the ALS Canada Team for a free, insightful webinar. Discover the comprehensive services […]
Join Defeat Duchenne Canada for an educational webinar featuring Dr. Jahannaz Dastgir, Executive Director of Clinical Development at REGENXBIO, as she shares the latest updates on RGX-202, an investigational gene […]
The Choroideremia Research Foundation (CRF) cordially invites you to join them June 25 – 28, 2025, for their International Conference at the Radisson Blu Mall of America in Bloomington, MN. […]
This workshop will co-design resources to support patients and families navigating the era of AI in medicine! The workshop is open to all and we welcome youth, adults, and families!
This year, PDSA will host its 25th annual update on immune thrombocytopenia (ITP) for patients, caregivers and the medical community in Philadelphia, PA July 25-27. This year’s patient conference will take place […]
Join ALS Canada and Sunnybrook Health Sciences Centre to learn about the impact of ALS on driving ability, adaptive driving equipment, how an ALS diagnosis may affect insurance, and available […]
Co-developed by ERN ReCONNET and LUPUS EUROPE, The Lupus100 Project is a multilingual resource based on real patient questions about lupus, turning a national patient booklet into a Europe-wide, medically validated information […]
Rare disease patient advocates are taking the lead in research like never before, driven by the urgent need for new treatments. The RARE Drug Development Symposium hosted by Global Genes […]
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!