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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. 

ALS Clinical Trials Unboxed

On Thursday, July 4, at 1 p.m. ET, join ALS Canada for our next ALS Clinical Trials Unboxed webinar to learn more about ongoing ALS clinical trials. In this webinar, Dr. Richard Robitaille from the Université de Montréal will present on an investigator-initiated trial of darifenacin.

Webinar: Rare Barometer survey on the impact of rare diseases on everyday life

On Wednesday 10 July, Rare Barometer, the global survey initiative of EURORDIS – Rare Diseases Europe, will launch a new survey on the impact of rare diseases on everyday life. The survey will be open to all people living with any rare disease and their family members worldwide and will be available in 25 languages, from 10 […]

Tell Me More: Why is Obtaining a Diagnosis Challenging?

We invite you to our next UDNF Tell Me More Lecture Series on Thursday, July 11th  at 12:00 p..m. ET for Why is Obtaining a Diagnosis Challenging? – Navigating the Uncharted Waters of an Ultra Rare Disease. Are you an undiagnosed patient who has been on a long diagnostic odyssey? Come join us for a discussion […]

Pediatric Inclusion Roundtable – Effective Inclusion of Children Early in Clinical Trials

Join Leavitt Partners, LLC, and Friedreich’s Ataxia Research Alliance (FARA) for the Pediatric Inclusion Roundtable: Effective Inclusion of Children Early in Clinical Trials. The program will engage all stakeholders regarding the need for including children earlier in clinical development, the requirements for early inclusion, and the most effective means for meeting those requirements.

EURO-NMD Gene Therapy Webinar Series – Genetic therapies and therapy developments for rare movement disorders

Willeke van Roon-Mom is a full professor of Human Genetics, in particular of translational studies of neurodegenerative disorders. Her work is highly translational in nature, working in close collaboration with clinical departments and industry. Unique patient-driven fund raising initiatives contribute not only financial input, but also patient perspective to research programs in her group. The […]

Cavernous Malformation Canada – 2024 Patient Conference

SickKids Hospital Peter Gilgan Centre for Research and Learning 170 Elizabeth St Toronto, ON M5G 1E8, Canada, Toronto, Ontario, Canada

This year our patient conference is ONE DAY ONLY, with optional activities happening Saturday. Keynote by Dr. Brent Derry, many expert presentations, and lunch with the scientists, as well as time to mingle with other patients.

CHILD-BRIGHT Network – Applying Anti-Racism Principles in Healthcare

Join us for "Applying Anti-Racism Principles in Health Care," on July 31, 12:00-2:00 p.m. EST/10:00 a.m.-12:00 p.m. PST. In this interactive workshop, Anna Hossain will be exploring systemic racism in the health care and research sectors. Key highlights: Recognize and understand the impacts of unconscious bias in health care interactions and relationships Understand the foundations of anti-racism and anti-oppression Gain […]

Canadian Scleroderma Research Group – Navigating Systemic Sclerosis Waters

The CME (Continuing Medical Education) Session hosted at the National Scleroderma Conference is for family practitioners, ER physicians, critical care physicians, internists, rheumatologists, nephrologists, cardiologists, respirologists, nurses, physiotherapists, occupational therapists, respiratory therapists, pharmacists, and students.

CHAEN / International Guideline Conference

Hilton Hotel Toronto Toronto, Ontario, Canada

The Canadian Hereditary Angioedema Network (CHAEN) is an organization of physicians who treat and/or are interested in Hereditary Angioedema. CHAEN is incorporated under the Canada Not-For-Profit Corporations Act. CHAEN unites physicians committed to ensuring all HAE patients in Canada have access to excellent care that reflects current management and treatment guidelines, and works to promote […]

4th Regional Meeting on ITP – PDSA Canada

The Courtyard Marriott Burlington Burlington, Ontario, Canada

On September 29, 2024, the 4th annual Canadian Regional Meeting will take place in Burlington, ON, for patients and families affected by ITP. The event will be held at the Courtyard Marriot. This meeting is a chance to meet other Canadian ITP patients and learn from Canadian ITP experts. If you are interested in registering […]

International Conference on Newborn Screening 2024

The 2024 meeting of the International Consortium on Newborn Sequencing (ICoNS) will be held in New York City, USA on October 9 – 10, 2024. ICoNS is the premier event for connecting with top experts and gaining insights into the frontier of newborn sequencing as screening for ushering in the era of preventive medicine.

4th Annual Symposium for Researchers and Clinicians on Wiskott Aldrich Syndrome

San Raffaele Institute Milan, Italy

The fourth international symposium for researchers and clinicians on Wiskott Aldrich Syndrome is being held in Milan, Italy and offers access to the latest research and analysis related to this rare disease. Meeting participants will gain valuable insights into innovative perspectives in both basic and clinical research. The scientific programme will draw together experts from […]

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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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