Canada’s cystic fibrosis population continues to grow, even as some face severe complications

TORONTO (March 21, 2025) – Today, Cystic Fibrosis Canada published its annual cystic fibrosis statistics for Canada. While the country’s cystic fibrosis population continues to grow thanks to life-changing therapies, this good news highlights the uncharted territory that the community is now in. As people with cystic fibrosis age, complications like CF-related diabetes, lung infections, depression, and anxiety highlight the need for appropriate care for a population that is no longer primarily children and continues to face severe challenges. 

The latest edition of the Canadian Cystic Fibrosis Registry Annual Data Report provides a snapshot of cystic fibrosis in Canada for the 2023 calendar year, based on information provided by the 40 dedicated cystic fibrosis clinics across the country.  

Highlights of the Canadian Cystic Fibrosis Registry 2023 Annual Data Report: 

Facts 

• There are 4,513 Canadians living with cystic fibrosis, an increase of 42.6% since 2003 
• Just over one-third (35%) of Canada’s cystic fibrosis population are children. 
• There were 75 new cystic fibrosis diagnoses in Canada, more than half of which (44) were identified through newborn screening programs. 
• 34 people within Canada’s cystic fibrosis community died in 2023 – highlighting that there is no cure and we have more work to do. 
• More than one-third (35%) of people with cystic fibrosis in Canada traveled 100+ kilometres to receive care. 

Trends 

• Survival: Half of Canadians born with cystic fibrosis today are expected to live beyond 62 years. This is nearly a 2.5-year improvement over 2022. 
• Mortality: The median age of death rose to 41.2 years. 
• Transplants: There has been a drop in transplants of all types since life-changing CFTR modulator therapies were introduced in Canada. Prior to 2020, there were about 50 to 60 transplants per year on average, compared to 13 in 2023. 

Read the 2023 Canadian Cystic Fibrosis Registry Annual Data Report on our website. 

Cystic Fibrosis Canada is responding to the changing cystic fibrosis story on several fronts, recognizing that there remain a significant number of people facing severe complications who risk being left behind, and a diverse range of care needs among those who are living longer with the disease. 

The report’s publication comes as Cystic Fibrosis Canada celebrates 50 years of the Canadian cystic fibrosis registry. The registry has been instrumental in monitoring trends, identifying areas for research exploration, and supporting advocacy for clinic resources and treatment access – all with the goal of helping Canada’s cystic fibrosis population have longer, healthier, better lives.