Tell us your views

We need your help in shaping the future of research, care and support for everyone affected by cystic fibrosis. What should Cystic Fibrosis Trust focus on and work towards over the coming years to help achieve a life unlimited?

The CF population is growing, with advancements in care and treatments meaning that people with CF are living longer. Alongside general growth, the makeup of the CF population is also changing, with an increase in adults living with CF. Once a condition mainly affecting children, CF now prominently impacts adults, with 65% of people with CF recorded on the UK CF Registry in 2024 being aged 16 or older.

Living with cystic fibrosis has changed over the past few years with changes in CF care to the cost of living crisis and economic uncertainty. Widespread access to CFTR modulator therapies like Kaftrio has had a positive impact on the health of many people, but they don’t work for everyone and they are not a cure.

We need to hear from the CF community today, on what the Trust’s priorities should be to work towards a life unlimited for you over the coming years. Your responses are anonymous, and this should take only a few minutes to complete. The consultation closes on 26 November 2025.

Please contact [email protected] with any questions or queries.