National Advocacy Update
Join Cystic Fibrosis Canada’s National Advocacy Update on Thursday, November 21, from 7-8 PM ET. This virtual event is open to volunteer advocates, and anyone wanting to advocate for individuals living with cystic fibrosis.

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.
Join Cystic Fibrosis Canada’s National Advocacy Update on Thursday, November 21, from 7-8 PM ET. This virtual event is open to volunteer advocates, and anyone wanting to advocate for individuals living with cystic fibrosis.
GRIDS brings together world renowned experts from across the globe to discuss recent developments and unique challenges in the field of lysosomal storage disorders and/or rare genetic diseases.
This webinar explores the challenges individuals with spina bifida face from adolescence to adulthood, focusing on patient-reported outcomes (PROMs) and urological management. Neurogenic bladder, a prevalent complication in SB, often leads to incontinence, hydronephrosis, and urinary tract infections, which may significantly affect quality of life (QoL). Advances in medical and surgical management have reduced the […]
Stem Cell Network is excited to partner with the University of Toronto’s Applied Organoid Core in delivering the 2024 Organoid Symposium: Generation and Applications of iPSC-Derived Organoid Models! Human pluripotent stem cell (hPSC)-derived organoid research offers unique opportunities to explore human disease, advance personalized drug discovery, and study complex biological processes such as development and […]
The Child Health Hub in Transition to Adult Healthcare is excited to be hosting the 2nd Transition to Adulthood Pop-Up event on December 2-3, 2023, at the beautiful Hyatt Regency in downtown Vancouver. This event aims to bring together youth, families, trainees, researchers, clinicians, and policy/decision makers to celebrate the best of what we are […]
Earlier this year, NMD4C, MDC and Quebec SMA Network hosted the first interactive training session for French-speaking physiotherapists and occupational therapists on assessment measures and practices for Spinal Muscular Atrophy (SMA). To complement this training session, the NMD4C will be hosting an English-language interactive training workshop on standardizing assessment practices in SMA outcome measures. This workshop […]
Learn how HDRN Canada's Data Access Support Hub (DASH) can help health researchers access multi-regional data.
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.
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).
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!