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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. 

CIHI-Foundations of Patient Partnering Virtual Sessions

Calling all patient and family partners! Are you interested in attending a training session to learn about foundational patient engagement concepts, participate in skill-building activities, and network with other patient and family partners? Consider signing up for a free 3-hour virtual training session developed in collaboration by CIHI and the Patient Advisors Network (PAN).

Building Bridges: Essential Supports for Children with Disabilities and Their Families in Schools, Healthcare, and Community

What do children with disabilities and their families need to thrive? A team of researchers, mothers, and children and youth with disabilities set out to answer this question by exploring their experiences during the COVID-19 pandemic and beyond. Their mission? To uncover what supports and services — spanning healthcare, education, and community life — families need now and in […]

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.

Rare Disease Day

Rare Disease Day is the globally coordinated movement on rare diseases, initiated in 2008 and led by EURORDIS and its 70+ national alliance patient organization partners working towards equity in social opportunity, healthcare, and access to therapies for people living with a rare disease. Rare Disease Day is held on the last day of February, […]

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 […]

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.

Dragon Claw Friends Webinar – Breaking Down Barriers – Are Patients Aware of Their Autoimmune Disease Treatment Options?

Despite significant advancements in the treatment of autoimmune diseases, many patients remain unaware of their options. Social media platforms are filled with stories of people struggling with uncontrolled symptoms—so why aren’t these breakthroughs reaching those who need them most? To explore this issue, Dragon Claw Charity Australia, in collaboration with CaPPRe, has conducted research into […]

National Healthcare Provider Workshop

In celebration of National Caregiving Day, the Canadian Home Care Association (CHCA) is hosting the National Healthcare Provider Workshop on, which will bridge insights from Hope for the Best, Plan for the Rest (McMaster University) and the CHCA eiCOMPASS Project, highlighting the transformative work of both initiatives.

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!