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Volunteer Advocate

Blog & News



Recent highlights from our advocacy work include: our submission to CADTH to ensure the patient voice is heard in cost the effectiveness recommendation they will make for Trikafta; the first provincial All Party Emergency Access to Trikafta Meeting; and, joining consultations held by Health Canada on the strategy in development for high costs drugs for rare diseases. 

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Update on covid-19 prioritzation

Update on COVID-19 vaccine prioritization for Canadians living with cystic fibrosis

In December of 2020, Dr. John Wallenburg, Chief Scientific Officer at Cystic Fibrosis Canada sent a letter to provincial Health Ministers urging provinces to prioritize Canadians living with cystic fibrosis (CF) and their caregivers, as they determine priority groups for the COVID-19 vaccination.

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We’re hitting the ground running in 2021 and are excited to share our plans for the year. Accessing life changing medications will remain a key focus, as will improving quality of care, continuing vital research and offering support services. We also want to learn more about our community’s priorities so we can have meaningful impact. 

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Cystic fibrosis occurs when a child inherits two defective copies of the gene responsible for cystic fibrosis (one from each parent). On average, a person with cystic fibrosis spends the equivalent of four months of full-time work doing life-sustaining treatments every year. In 2019, 46 Canadians with cystic fibrosis had surgery for a lung transplant
Upcoming Events
March 4th 2021
People with speech bubbles
Webinar series | Trikafta : How to advocate for access

Join us on March 4th to learn more about the canadian political environment and how you can advocate for access to Trikafta. In this webinar, an expert from Hill & Knowlton in the drug-approval political environment will explain Trikafta’s position in the system and the road ahead before the treatment is in the hands of those who need it. 

6:00 -7:00pm EST Thursday 4th March, 2021

To attend:

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March 6, 2021
Sweat for CF 2021

Fit Mama Training is offering virtual fitness classes all March long to raise funds for Cystic Fibrosis Canada! 

*See event listing for more information*

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CF Champions
Ian Pettigrew
Age 45, Hamilton, Ontario

Award-winning photographer and graphic designer Ian Pettigrew knew something wasn’t quite right when he was unable to have children. He was 38 years old when he discovered the real culprit behind his health issues – cystic fibrosis.

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