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Volunteer Advocate

Blog & News

Federal caucus open letter to health minister

AN OPEN LETTER TO THE FEDERAL HEALTH MINISTER

In a tremendous show of support for the cystic fibrosis community, an open letter to  federal Health Minister, Patty Hadju, has been signed by 44 Members of Parliament from all political parties. 

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medicines

ADVOCACY‌ ‌UPDATES‌ ‌AND‌ ‌LATEST‌ ‌NEWS‌ ‌-‌ ‌FEBRUARY 12

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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Over 2,000 different mutations of the CF gene 65% of Canadians newly diagnosed with cystic fibrosis in 2019 were diagnosed through newborn screening 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: https://us02web.zoom.us/j/87186551060.

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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
Tamy Mailly
Age 19, Montréal, Québec

With her sparkling eyes, gentle smile and joie de vivre, Tamy often leaves others in disbelief when they find out that she has cystic fibrosis.

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