What is the Gene Hub and how do I use it?

The ALS Society of Canada (ALS Canada) is committed to a future where anyone living with ALS, or with a known genetic risk of ALS, understands how genetics may impact them. We aim to provide accurate and relevant information, as well as pathways to action for those who wish to access genetic care.

This will be a multi-pronged approach that involves:

  • working with experts across the country to support the evolution of genetic counselling and testing practices;
  • attracting top genetically-targeted experimental and proven treatments to Canada;
  • exploring opportunities for individuals with high genetic risk for ALS to contribute to research, and work towards better care; and
  • support for people with high genetic risk for ALS in line with best practices being developed through global initiatives.

The ALS Canada Gene Hub is intended to serve as a central resource for global ALS genetic information and opportunities. The Gene Hub provides a large amount of information, from an overview of how genetics work, to resources on genetic counselling and testing – where you go within the Gene Hub can depend on your level of understanding of genetics and what kind of information you’re looking for.

This information is for initial guidance and learning only.

The information contained in the ALS Canada Gene Hub is for educational and informational purposes only. It is not intended to replace the importance of speaking with an ALS neurologist and/or genetic counsellor.

Main topics

Explore foundational genetics, testing guidance, and research pathways in ALS.

Other topics

Explore additional information, support, and advanced genetic resources dedicated to enhancing ALS understanding and advocacy within the community.