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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 Moments: Virtual Storytelling Evening

Don’t miss Rare Moments: Virtual Storytelling Evening 📅 February 27 @ 7:00 p.m. ET Register: https://bit.ly/4ht5Ox9 It will be an inspiring evening of storytelling as families from across #Canada come together to share their experiences living with Duchenne #musculardystrophy.

CORD Rare Disease Day 2025 Webinar

CORD is hosting a special webinar on Friday, Feb 28 from 12-1pm EST so that everyone from across Canada can tune in and help put that funding to work. Here’s what they’ll discuss: - Ending the diagnostic odyssey with CHEO’s ThinkRare - Treating and tracking rare diseases at BC Cancer - Caring for complex kids […]

Celebrate Rare Disease Day: Advancing Clinical Trials Together

On February 28th, in recognition of Rare Disease Day, the European project DREAMS (www.dreamshorizon.eu) invites you to a thought-provoking online webinar: "Clinical Trials in Focus: Innovations and Patient Perspectives in Rare Diseases". Join leading experts as they explore advancements in clinical trial methodologies, outcome measures, and lessons learned from research in muscular disorders.

RQMO 2025 International Rare Disease Day

To celebrate International Rare Disease Day, the RQMO is organizing an activity on March 1, 2025 at the Sandman Hotel located at 999, rue de Sérigny in Longueuil. The event will take place from 10 a.m. to 3 p.m. and will be followed by a networking cocktail from 3 p.m. to 5 p.m. The activity […]

ALS Clinical Trials Unboxed

Join ALS Canada, on March 6 at 1:00 pm ET, for ALS Clinical Trials Unboxed. In this webinar, Dr. Lauren Kett, Medical Director of Clinical Development at Amylyx Pharmaceuticals will present on the Phase 1 LUMINA study, an investigational antisense oligonucleotide (ASO) targeting calpain-2 for the potential treatment of ALS.

Navigating the Transition from Pediatric to Adult Neuroimmunology Care

This webinar will provide an overview of the transition from pediatric to adult medical care, featuring insights from a pediatric neurologist, social worker, and a neuropsychologist. Topics will include maintaining continuity of care, managing complex medical conditions, self-advocacy in healthcare settings, and addressing social and emotional considerations. The discussion aims to support patients, families, and […]

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!