Accessing Data through DASH
Learn how HDRN Canada's Data Access Support Hub (DASH) can help health researchers access multi-regional data.

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.
Learn how HDRN Canada's Data Access Support Hub (DASH) can help health researchers access multi-regional data.
This year, the 8th edition of Duchenne Patient Academy will take place. The Academy provides online training for Duchenne and Becker muscular dystrophy (DMD/BMD) patient advocates. Duchenne Patient Academy 2024 will take place on Friday December 6, and Saturday December 7 fully online. Over the course of 2 days, Duchenne Patient Academy attendees will listen to […]
This presentation will summarize existing evidence as well as evidence gaps regarding mental health outcomes in children with neurodevelopmental conditions including rare genetic disorders.
Join ALS Canada and a panel of presenters for the ALS Canada Webinar: Exploring Holistic Therapies to learn about various holistic therapies and techniques including Reiki, deep breathing, intuitive energy healing, and wellness drumming. Each presenter will have a small presentation and demonstration.
This Webinar will: Provide general information on the call, including its scientific goals, administrative aspects, support services, and patient engagement strategies. Address your questions through two dedicated Q&A sessions.
This webinar will explore how rare conditions shape and inform social and family relationships, drawing from the lived experience of affected individuals, caregivers and parents, and siblings. The outcome of the webinar will be a factsheet to help increase awareness about the impact of rare conditions on both social and family relationships, and how to […]
NMD4C and MDC are pleased to invite you to a webinar on Exploring the clinical trial landscape in Duchenne muscular dystrophy: Challenges, opportunities and consideration of a possible cholesterol metabolism-related target. NMD4C and MDC are providing organizational and technical support. This is a an independent clinical/academic webinar with no industry sponsorship or influence.
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).
The Global Albinism Alliance (GAA) is very pleased to announce the 2025 International Scientific Conference on Albinism – ISCA 2025, that will be held virtually on January 21-24, 2025. ISCA is THE meeting point worldwide for all scientists interested in sharing and improving knowledge of the biomedical aspects of albinism and, more generally, improving the health of those with albinism. […]
Delivered by Dr. Filip Eftimov (University Medical Center of Amsterdam, the Netherlands) & Jean-Philippe Plançon (EPODIN – European Patient Organisation for Dysimmune and Inflammatory Neuropathies, France), January 23rd 2025 at 16:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology. READ CAREFULLY please: By registering […]
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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