All about Cystic Fibrosis Canada

We were founded by parents of children with cystic fibrosis in 1960. Since then, we’ve worked closely with the cystic fibrosis community to dramatically change the cystic fibrosis story, for the better. But we’re not done yet.

Mascot hugs young child at CF Canada fundraising event

A young boy with CF with his sister and a dog in a wagon

Cystic fibrosis is in a time of great change.

New drugs are available and can help many people with cystic fibrosis live longer and healthier lives than ever before. But others don’t see that same promising future.

We celebrate our 65-year history and the extraordinary achievement of having doubled life expectancy for Canadians living with cystic fibrosis. We’ve contributed to the global body of CF knowledge, funding research achievements such as mapping the gene that causes cystic fibrosis in 1989. And we’ve advanced access to life-changing CF medicines in Canada through relentless advocacy and government relations work. For most young children diagnosed in the next few years, their experience with cystic fibrosis will be different, and most likely a more hopeful story. But today, there is still an immense burden for many Canadians, and we work hard on their behalf.

Help build lives without limits

Yes, we’ve come a long way. Many Canadians are living healthier, longer lives. Yet, there is no cure. Some still face an immense daily burden and others can’t benefit from the new treatments we helped bring to this country. We are working to that day when all Canadians with cystic fibrosis can live healthier, fuller lives with your help. Our 2024-27 Strategic Plan outlines how we’ll do it:

Influence health and financial support systems so that:

Drug access is improved and more equitable across the country

People have a reduced financial burden

Advance knowledge about CF in priority areas so that:

There is better understanding of how to manage or treat priority health issues

There are more clinical trials available for those with the greatest health need

Connect people and resources so that:

Emotional impacts of the disease are reduced

People with CF are informed about priority issues related to their disease

Drive action around needed care so that:

The burden of care, including mental health issues, is reduced

The clinical care model is adapted for current and future needs

Our mission

To act boldly for all Canadians living with cystic fibrosis so they can live longer, healthier, fuller lives.

Our vision

To live fully, beyond the limits of cystic fibrosis.

Our values

As we work together with Canada’s cystic fibrosis community to achieve our mission, we are committed to these four core values:

Connected

We are strongest when we collaborate well with our team and are connected to our community.

Impactful

We are intentional in our focus to ensure we create a better future for people living with CF in Canada.

Inclusive

We nurture a diverse and inclusive environment where everyone feels valued, and is heard, seen and respected.

Bold

We think and act boldly to inspire the best outcomes for people living with CF in Canada.

Our approach

As the only national organization with a legacy like ours and valuable data from our Canadian Cystic Fibrosis Registry, we are in a unique position to leverage our strengths, partnerships and expertise throughout Canada to prioritize the greatest need, drive change and provide much needed support to our community.

Invest in the right research

Our research roadmap is a five-year plan for thoughtful and impactful investment in research. Listening to people living with cystic fibrosis to help determine the most urgent priority health issues, we will invest in areas of unmet need, attract bright scientific minds to fuel innovation and create impact sooner.

Learn more

Evidence based

Having health data through our Registry on almost every person diagnosed with cystic fibrosis in Canada provides us with a unique ability to be deeply anchored in real world evidence and experience. We are always informed by our cystic fibrosis community and as we learn more, we will better position ourselves for the future.

Learn more

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Advocacy & Government Relations

Our ability to mobilize the community across Canada continues to be important as we drive change in the system, ensuring all levels of government are focused on making sure everyone who can benefit from new treatments does.

Learn more

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Community Engagement

We count on our people across the country to advance the cystic fibrosis story through volunteering, participating in clinical trials, fundraising, donating, sharing personal stories and contributing CF insights through our Elevate program and other opportunities.

Explore Elevate

1962

First research grants are awarded to Dr. Morley Lerzman in Winnipeg and Dr. Victor Marchessault in Montreal.

1969

First cystic fibrosis clinic for young adults opens in Montreal.

1989

The CF gene is discovered by CF Canada-funded researchers in collaboration with the U.S. Cystic Fibrosis Foundation.

2022

All provinces and territories fund Trikafta for 6+ with at least one fdel508 mutation.

Milestones of success

We thank our founding families, the Summerhayes and the Moutons, for their leadership and drive for change. And our community – people in Canada living with cystic fibrosis, parents and caregivers, donors, partners, volunteers, researchers, healthcare professionals and staff - for contributing their time, talents and insights to advance cystic fibrosis research, treatment and care in Canada.

There are many important milestones that mark our sixty-five-year journey (above are just a few). They’ve been accomplished with the passionate participation of our cystic fibrosis community across the country, our generous supporters and volunteers, and the committed researchers and clinicians who work to help people with cystic fibrosis live longer, healthier lives.

Read about the CF Story in Canada

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Cystic Fibrosis Canada publications

We produce several robust annual publications that reflect the latest in CF research and statistics, personal stories and profiles, and updates on all the ways Cystic Fibrosis Canada helps our community live without limits. You’ll find our latest publications on our Publications & Financials page and other helpful information in our Resources Hub.

2022 Annual Data Report and 2022 Highlights

Our community rocks!

Read all

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Stories

“We’re not just treating lungs – we’re supporting the whole person”

At St. Paul’s Hospital in Vancouver, social worker Pat MacDiarmid has spent nearly two decades walking alongside adults with cystic fibrosis (CF), helping them navigate both the emotional and practical realities of living with a chronic illness.

Oct 10, 2025

Stories

One More Breath: Audrey’s Journey with Cystic Fibrosis and Mental Health

From the outside, 25-year-old Audrey’s life in Sorel-Tracy, Quebec, might seem full of light. But behind the moments of joy is a lifelong battle with cystic fibrosis – one that has tested not only her body, but her mind. Read more and learn how you can help expand mental health resources for people living with CF.

Sep 17, 2025

A smiling woman laying on a hospital bed holding a thumbs up.

Stories

Living with Cystic Fibrosis: Kiley’s Story of Strength, Survival, and Mental Health

Kiley, 21, spends her time journaling and working at a local pub—all while trying to deal with the mental challenges of cystic fibrosis (CF). Read more and learn how you can help expand mental health resources for people living with CF.

Sep 2, 2025

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