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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. 

Clinical trials in rare disease: The role of patient registries

Therapies for rare diseases are emerging at a rapid pace yet rigorous evidence regarding their safety, efficacy, and effectiveness in practice is often sparse and is difficult to generate. High quality longitudinal patient registries may help to address this evidence gap.

A.I in Genomics

A.I. in Genomics is a panel discussion and interactive Q & A with Dr. Orion Buske, Chief Technology Officer of PhenoTips and technical lead for multiple international standards and data sharing initiatives in genetics, and Dr. Mark Kiel, Chief Scientific Officer and founder of Genomenon, hosted by DNA Today's Founder, Producer, and Host, Kira Dineen, […]

Gene Therapy Webinar Series – Episode 5: Genetic therapies and therapy developments for epileptic disorders

Dimitri Kullmann is a consultant neurologist at the National Hospital for Neurology and Neurosurgery, and professor of neurology at the UCL Queen Square Institute of Neurology. He trained in Oxford and London, and is a Fellow of the Academy of Medical Sciences and of the Royal Society. He specialises in neurocritical care and myasthenia gravis. His research […]

Network 2 Network May Community Forum

Register for the next N2 Canada Community Forum, where N2 will celebrate International Clinical Trials Day! Raisa Chowdhury, Project Coordinator from the Canadian Cancer Trials Network (3CTN) will present their new EDI way finder tool. Additionally, Sarah Bridges, Research Coordinator from the Maritime SPOR SUPPORT Unit and the N2 Public Engagement Committee Co-Chair will present […]

Gene Therapy Webinar Series: Episode 6 – Genetic therapies and therapy developments for muscular dystrophies (DMD, LGMD)

Prof. Dr. Annemieke Aartsma-Rus is a professor of Translational Genetics at the Department of Human Genetics of the Leiden University Medical Center (LUMC, the Netherlands). She played an important role in the development of antisense mediated exon skipping for Duchenne muscular dystrophy during her PhD research (2000-2004) at the LUMC. Her work currently focuses on […]

FcRn Inhibitors and Novel Options for Myasthenia Gravis

Muscular Dystrophy Canada (MDC) is pleased to present a webinar on the neonatal Fc receptor (FcRn) pathway for people with generalized Myasthenia Gravis (gMG). MDC is excited to have their webinar speaker discuss next generation treatments for Myasthenia Gravis and help us understand how these treatments work in the neuromuscular pathway.

Accessing Data through DASH: CanPath & HDRN Canada Partnership

Are you a researcher seeking data from Canada’s largest population study – the Canadian Partnership for Tomorrow’s Health (CanPath)? HDRN Canada’s Data Access Support Hub (DASH) offers coordinated services to researchers interested in accessing administrative health data from more than one province or territory in Canada. Learn about the innovative partnership between CanPath and HDRN […]

Gene Therapy Webinar Series: Episode 7 – Health technology assessment (HTA) of genetic therapies

Oriana Ciani is an Associate Professor of Practice in the Public Management and Policy, Health Economics, and HTA (Health Technology Assessment) Area at SDA Bocconi School of Management. Her collaboration with SDA began in 2010. She coordinates the Epidemiology and Public Health module in the “Master of International Health Care Management, Economics and Politics” (MIHMEP) […]

Corticosteroids and Neuromuscular Disorders

Muscular Dystrophy Canada (MDC) is pleased to present a webinar on corticosteroids and how and why they are used in people diagnosed with neuromuscular disorders.

RARE Pride: A Queer Conversation

Does your identity as LGBTQ+ intersect with your life as a rare disease patient, parent, caregiver or ally? Global Genes will be hosting a forum for stakeholders in the rare disease community to discuss their intersectionality as part of both the rare community and queer / LGBTQIA + community. Global Genes wanted to create a […]

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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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