ALS may not be considered rare by all. But the community of approximately 3,000 Canadians living with the disease today is small enough to face unique challenges, with access to therapies – from clinical trial to reimbursement – being a significant one.
As the Government of Canada considers how best to create a national strategy on drugs for rare diseases, Canadians – including organizations like ALS Canada – have been invited to provide input into what a national strategy could look like. It’s important that we take this opportunity to bring forward the perspectives and experiences of people living with ALS and we want to hear from you!
To help inform our submission, ALS Canada is conducting a survey to gather information from anyone who:
- Is living with ALS;
- Is a caregiver, family member or friend of someone currently living with ALS; or
- Has lost a loved one to ALS.
We invite you to read the Government of Canada’s consultation Discussion Paper for Engaging Canadians, which describes key considerations and questions for developing a national strategy, and to respond to our questionnaire, which has been designed specifically to seek the input of the ALS community.
The survey will be open until March 15, 2021, so we encourage you to make your views known today.
The information you provide by completing our questionnaire will help tell government that the needs of people living with ALS are urgent and, with potential new treatments in the pipeline, it’s essential that Canadians be able to access them quickly, equitably and affordably.
Thank you for your consideration and engagement in this process.