Newly diagnosed? Start here

Receiving an ALS diagnosis can be hard. There is so much information to take in, and it’s easy to get overwhelmed. We’re here to help you sort through it all.

Home Services and Resources Newly diagnosed? Start here

Receiving a diagnosis of ALS can be overwhelming. You may experience many different emotions, and you may feel the need to learn more about how this complex disease will affect you. Some people want to know as much as possible, often right after diagnosis. Others prefer to take a gradual approach as changes occur and as the need for specific information develops. Take the approach that works best for you.

Family members and close friends may also wish to learn more about ALS.

Here are a few important resources to get you started:

ALS Guide

The ALS Guide has been developed to provide practical information about ALS, its progression, and how people and families living with ALS can find solutions to help maintain independence. This version of the guide is the Quebec version. Other versions have the same content, except for the information about the local delivery of care and services, which can be different from province to province. The purpose of the ALS Guide is to help people and families with ALS plan for the physical, emotional, and financial challenges ahead and to offer tips and support for the day-to-day challenges of living with ALS. It is meant to complement your primary source of information – the healthcare team managing your ALS.

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List of ALS clinics/treatment centres in Quebec

ALS clinics are multidisciplinary centres aimed at delivering expert care to people and families living with ALS. Clinics provide education, monitoring and timely interventions, while promoting regular communication with your family doctor and community healthcare providers. In addition, the clinics and their teams of professionals are among the community of researchers in Canada who are working to discover effective ALS treatments. ALS treatment centres are places where people and families can receive ALS care but may or may not have multidisciplinary care and opportunities to participate in research. Early referral to an ALS clinic can often speed up diagnosis of the disease,¹ and numerous studies have shown that patients who receive care at multidisciplinary clinics have better outcomes.^2,3

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Our team!

We believe that no one affected by ALS should be left on the sidelines or feel alone in navigating their changing needs. That’s why we offer a range of services to Quebecers and their family members at every stage of the disease, from diagnosis through to end-of-life and bereavement. Our services are also available to people and families affected by primary lateral sclerosis (PLS). Whether you are living with ALS, a family member, or a health care professional, we’d love to hear from you.

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Some of the content on this page is sourced from the ALS Guide, which was published in 2019 as a joint project of ALS Societies across Canada.

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