The Federal Government announces the National Strategy for Drugs for Rare Diseases

Today, the Federal Government announced the National Strategy for Drugs for Rare Diseases. We are pleased to see this strategy move forward and hope it will be a significant step in building knowledge and improving access to therapies for people living with rare diseases, including the ALS community. 

Throughout the establishment of the strategy, the ALS Society of Canada had the opportunity to bring forward the perspectives of the ALS community. We remain committed to being a partner and working with the federal and provincial governments to establish rare disease pathways in each province, while advocating for swift action to meet the urgent needs of people affected by ALS. We will also continue to engage with all stakeholders on various initiatives to support the implementation of the strategy.  

“Every day counts for Canadian families living with ALS and we cannot continue to wait years through a series of drawn-out, confusing, red-tape-filled processes for access to innovative therapies. With the announcement of the National Strategy for Drugs for Rare Diseases, we call on each province to utilize the Government of Canada’s investments and establish a pathway for expedited and equitable access to therapies today and in the future. The Time is Now to support all Canadians living with ALS.” – Tammy Moore, CEO, ALS Canada 

We will continue to share information as we learn more about the National Strategy for Drugs for Rare Diseases. 

You can read the government’s press release here. 

You can read our roadmap to a streamlined pathway for expedited and equitable access to ALS therapies in our position paper The Time is Now.