Available Resources

Today, more is known about this relentlessly progressive motor neuron disease which causes paralysis and leads to the death of approximately 1,000 people in Canada each year. And while the prognosis of ALS is variable and its progression difficult to predict, (i) we know that it can move with startling swiftness – leaving a very narrow window of time to slow it down, often further compressed by delayed diagnosis.

In this Toolkit, you will find the following resources: Template Meeting Request, ALS Fact Sheet, Sample Meeting Flow, Eversana “How to Tell Your Story”, The Time is Now Meeting Deck (Provincial), The Time is Now Meeting Deck (Federal), and Report Back Form.​

A resource that supports and empowers advocacy efforts aimed at improving the lives of people living with ALS (Amyotrophic Lateral Sclerosis).

Approaching government through a combination of channels at an organizational level and individual level puts the ALS community in a better position to make our voices heard.

ALS Canada’s work is empowered by community. Discover how, in 2023, our work within the ALS community helped people affected by the disease feel empowered and informed to make decisions and engage in advocacy efforts.

In early March, members of the ALS community joined ALS Canada in Ottawa for two days of advocacy training and meetings with politicians and other government officials.

In Canada, what the provincial health care systems provide does not always match the needs of people living with ALS. This statement rings true for Ontario, where the current ALS care and support landscape in the province presents people living with ALS with significant challenges that demand immediate action.

ALS Society of Canada marks June’s ALS Awareness Month by shedding light on the nearly 4,000 Canadians living with ALS and their families.

Today, February 28, marks Rare Disease Day. A day that provides the ALS Society of Canada (ALS Canada) a chance to bring awareness to the disease alongside other potentially lesser-known diseases to work together towards equity in health care, and access to diagnosis and therapies.

The ALS Society of Canada (ALS Canada) is pleased to be collaborating with IMD Health to provide easily accessible, up-to-date digital health education to healthcare providers, people living with ALS, and their families on the IMD platform.  

The ALS Society of Canada (ALS Canada) joins the global ALS community in recognizing June as ALS Awareness Month. More than 3,000 Canadians live with amyotrophic lateral sclerosis (ALS), a neuromuscular disease that paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will.

With its world-class clinics and ALS specialists, Canada is well positioned to be a leader in clinical trial access.

ALS Canada reached out to each major political party to get more details about how they, if elected, would support access to therapies for the Canadian ALS community.

Over the past several years, ALS Canada, together with the ALS community and a coalition of patient groups across Canada, has raised the alarm about the consequences of the proposed changes to Patented Medicine Prices Review Board (PMPRB) regulations for Canadians.

Are you, or someone you love, living with ALS? Or are you a caregiver or family member who has lost someone to ALS?  Then we want to hear from you!

The 2021 federal election is wrapping up in less than a week! With Election Day scheduled for Monday, September 20, 2021, now more than ever, it’s important to know the issues that matter to you before you cast your vote.

Earlier this year, manufacturer Amylyx announced that it plans to pursue Health Canada approval for its AMX0035 therapy. We’ve updated the blog post we first published back in 2018 about how new drugs become accessible in Canada to help orient you to the steps involved, their purpose, the milestones along the way and the timelines involved.