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 […]
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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.
Webinars
CADTH: CDA-AMC Webinar – An Update on the Development of Newborn Screening Guidance in Canada
Join Dr. Hilary Vallance and Whitney Ayoub-Goulstone, cochairs of the Newborn Screening Advisory Panel, provide an update on our work to develop pan-Canadian guidance for newborn screening programs across the […]
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 […]
RARE Storytelling Webinar
While each rare disease presents unique challenges, the common thread of stories and experiences unites us as a community. Global Genes rare storytelling initiative aims to empower individuals within the […]
Sneak Peek into Rare Disease Day 2025
Join our upcoming webinar for a sneak peek into Rare Disease Day 2025! On Wednesday 17 July we will be hosting three webinars throughout the day to cater to different […]
Racial and Ethnic Diversity in Pediatric Clinical Trials: Current Barriers and a Path Towards Inclusive Clinical Trial Design and Conduct
Webinar objectives: 1. Understand the role that historical and ongoing marginalization play in research participation 2. Discuss how research findings in homogeneous populations are not generalizable to all children 3. […]
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 […]
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 […]
Considerations for effective integration of gender and sex in research and clinical trials
In this session, Dr. Natalie Rosen will explore best practice guidelines for researchers to build more equitable, reflective, and inclusive research and clinical trials with respect to gender and sex. […]
Reproductive Health and Autoinflammatory Disease
Have you ever wondered about how autoinflammatory diseases and their treatments affect your reproductive health? As part of its Questions, Answered series, the Canadian Autoinflammatory Network - Réseau Auto-inflammatoire Canadien […]
Showing Up 101
"Showing Up 101" is a gently guided, grief informed experience intended to share a language of loss, introduce frameworks for grieving and coping, and promote openness and connection for moving […]
Prioritizing Disability Inclusion in Health Research
Join members of the CHILD-BRIGHT National Youth Advocacy Council on Aug. 19 at 1 p.m. ET/10 a.m. PT as they explore the crucial importance of including people with disabilities in […]
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!