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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. 

‘Autonomic dysfunction in movement disorders’ by Pietro Guaraldi

Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

ALS Research and Clinical Trials 101 Q&A Drop-In

This monthly Q&A drop-in session is available for people living with ALS, their families, caregivers, and anyone close to someone living with the disease who is seeking information or might have questions about ALS research and/or clinical trials.

Webinar on ”mental health and behavioral difficulties in children with rare neonatal surgical disease”

You are invited to join an insightful webinar hosted by ERNICA, eUROGEN, and EURORDIS on Mental health and behavioral difficulties in children with rare neonatal surgical disease: assessment, outcomes and implications for research, policy and practice'. This interactive session will raise awareness of the mental health and behavioral challenges faced by children with rare neonatal surgical […]

Muscle pathology of storage diseases with focus on plyglucosan and lipid storage myopathies

Delivered by Prof. Anders Oldfors (University of Gothenburg, Sweden) on November 21st 2024 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 and attending the webinar you consent to the recording of the webinar and its later diffusion […]

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.

Genetic Rare Immune Disorders Symposium (GRIDS)

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.

The Role of Genetic Counselors in Genomic Mainstreaming

The Role of Genetic Counselors in Genomic Mainstreaming is an international panel discussion and interactive Q & A with Demetra Georgiou, Genomic Transformation Manager at Imperial College Healthcare NHS Trust, Jill Stopfer, Associate Director of Genetic Counseling at the Dana Farber Cancer Institute, and Laura Hercher, Director of Student Research at Sarah Lawrence College Human […]

Outcomes and challenges in Spina Bifida: bridging adolescence and adulthood

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 […]

ENVISAGE – IAACD global listening and sharing session

Travel the globe with the International Alliance Academies of Childhood Disability (IAACD) in a 24-hour VIRTUAL listening and sharing session to celebrate the International Day of Persons with Disabilities! This year’s theme is “Families: Who Cares for Them?”. For the first time ever, Canada is represented in this event!

Organoid Symposium & Workshop

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 […]

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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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