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.
The webinar series is all about patient engagement in health research, also known as patient and public involvement (in the UK) or consumer involvement (in Australia). 'Patient engagement’ in health research is where patients are research team members. This is different from volunteering to be a research participant where you might help advance research or […]
The RARE Bootcamp is designed for patients and advocates who have started funding rare disease research and are looking to better coordinate and build structure around their efforts. For more information or to register, please email bootcamp@ultragenyx.com
The European Conference on Rare Diseases and Orphan Products (ECRD) is the largest, patient-led, rare disease policy-shaping event held in Europe. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease […]
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 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, […]
The CureDuchenne FUTURES National Conference is an annual event focused on bringing education, connection, and hope to the entire Duchenne community.
IRDiRC is co-hosting together with Hope for Rare Foundation and Fudan University, the Global Rare Diseases Research Symposium & The Second China Rare Disease Research and Translational Medicine Annual Conference on May 23-25 in Shanghai (China). The conference will last for 2.5 days with 21 parallel sessions and several satellite meetings. It will bring together […]
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 […]
Join IMAGINE SPOR tomorrow for Dr. Deborah Marshall's (Steering Committee Member) session on : "IMAGINE Patient Training Experiences Through the PaCER Program" at the 2024 Northwest SPOR Collaborative Forum!
The inaugural NMD4C basic science research summer school for neuromuscular research trainees will be held over May 27th-28th, 2024 in Montreal, QC. This annual summer school will serve to provide lecture-based and hands-on training workshops to neuromuscular trainees in cutting-edge wet lab and bioinformatics techniques, while providing an environment for trainees to present their research and network in-person with colleagues […]
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