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.
Virtual
Calendar of Events
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From Grassroots to Global: Growing Momentum Towards a WHA Resolution on Rare Diseases
From Grassroots to Global: Growing Momentum Towards a WHA Resolution on Rare Diseases
Join RDI for a webinar on the global movement behind the efforts to advocate for a WHA Resolution on Rare Diseases
Rare Moments: Virtual Storytelling Evening
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.
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CORD Rare Disease Day 2025 Webinar
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
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.
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RQMO 2025 International Rare Disease Day
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 […]
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ALS Clinical Trials Unboxed
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
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 […]
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Empowering Patients 2025: A Cell and Gene Therapies Summit
This free, virtual event in two half-day sessions offers educational discussions for foundation leaders, patients, and caregivers to better understand #GeneTherapy and #CellTherapy.
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NMOSD in sub-Saharan Africa
NMOSD in sub-Saharan Africa
The experts will provide insights and answer questions about the prevalence and incidence of NMOSD, diagnostics, available treatments, immunizations, clinical trials, and more. Patients, caregivers, clinicians, researchers, and advocates from around the world are invited to attend. Live participants will have the opportunity to ask questions directly to the experts. The webinar will be recorded […]
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Webinar on “Neurogeriatric Aspects of Huntington’s Disease and Chorea”
Webinar on “Neurogeriatric Aspects of Huntington’s Disease and Chorea”
Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).
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Save-The-Date: RareKids-CAN Virtual Information Session
Save-The-Date: RareKids-CAN Virtual Information Session
During this information session, you will gain an overview of RareKids-CAN, build connections within the community, and more!
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AIHA Awareness Day 2025
AIHA Awareness Day 2025
AIHA Awareness Day 2025 brings together patients, care partners, physicians, researchers, industry leaders, and legislators for virtual presentations that honor and support the journeys of those affected by Autoimmune Hemolytic Anemia and other Acquired Hemolytic Anemias. This day is a powerful call to action to inspire us all to champion hope, understanding, and awareness.
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Dragon Claw Friends Webinar – Breaking Down Barriers – Are Patients Aware of Their Autoimmune Disease Treatment Options?
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 […]
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Understanding what matters to children and families: The socioeconomic impact of childhood arthritis
Understanding what matters to children and families: The socioeconomic impact of childhood arthritis
This presentation will share findings from the Health Economics research lead by Dr. Marshall as part of the international UCAN CAN-DU and CURE research program on childhood arthritis.
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Transdiagnostic approaches vs precision health in neurodevelopmental conditions: perfect match or irreconcilable differences?
Transdiagnostic approaches vs precision health in neurodevelopmental conditions: perfect match or irreconcilable differences?
Dr. Anagnostou will explore the intersection of transdiagnostic approaches and precision health in neurodevelopmental conditions. With significant investments in both precision medicine and needs-based care, how can learning health systems reconcile these two approaches? This talk will examine emerging data, recent innovations, and ways to integrate these frameworks to improve care for children and youth […]
National Healthcare Provider Workshop
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.
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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!