Be sure to bookmark this page and check in frequently as we are regularly adding new resources. If you’ve found a resource particularly helpful and don’t see it listed here, please recommend it to us by emailing

Please note there may be additional resources within the French section of our website. The FR icon means that the resource is also available in French.

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*Event : Spotlight on ALS Research and Q&A session – June 10 2024

On June 10, 2024, leading ALS researchers shed light on their research and answered questions from the ALS community. The meeting was moderated by Dr. Richard Robitaille, Full Professor in the Department of Neurosciences at the Université de Montréal. This event was an excellent opportunity for families and people living with ALS to ask their […]

*Educational Webinar – Consent to care

A webinar by maître Hélène Guay explaining what consent to care means in legal terms and why it is essential to your journey with ALS.

Kare: The Magazine for Young Caregivers

This magazine, available in English or in French, includes information and stories about what being a young carer is like, emotional regulation and self-care strategies, tips for balancing school and caregiving, media recommendations, and where to find help.

Canadian Neuromuscular Disease Registry (CNDR)

The Canadian Neuromuscular Disease Registry (CNDR) is a Canada-wide registry of people diagnosed with neuromuscular diseases including ALS.

Clinical Trials Quebec

Clinical Trials Quebec (CTQ) is an information and services hub for all things clinical research, powered by the CATALIS Network and developed in partnership with the Quebec government. CTQ is an innovative provincial tool that provides high quality, complete, neutral, and accessible information on clinical research, as well as free services that improve access to […]


CAPTURE (Comprehensive Analysis Platform To Understand, Remedy, and Eliminate) ALS is a Canadian platform that unites patients, physicians and researchers in academia and industry to study ALS.

Mother’s Day and Father’s Day when a child has lost a parent

Mother’s Day and Father’s Day can be especially difficult for children and youth grieving the death of a parent or step-parent. Canadian Virtual Hospice teamed up with children’s grief specialist Ceilidh Eaton Russell to create a new resource to help.

Pathways to Resilience

In a series of 6 webinars recorded at the beginning of the COVID-19 pandemic, occupational therapist and researcher Rachel Thibeault explores the concept of resilience.

ALS Quebec does not endorse and is not responsible for the information contained on external sites. Should you have questions about any of the services or require additional information, please contact the organizations directly. These links are provided as a convenience and should not be construed as endorsements of any of the organizations.