Information for people living with CF

Useful websites

About CF

The CF trust The Cystic Fibrosis Trust is the UK's only national charity dealing with all aspects of Cystic Fibrosis www.cftrust.org.uk

The CF foundation The CF Foundation is the leading organisation in the United States devoted to cystic fibrosis www.cff.org

CF worldwide Cystic Fibrosis Worldwide (CFW) is dedicated to improving quality of life and life expectancy for persons living with cystic fibrosis globally www.cfww.org

Ecorn CF Ecorn-cf allows patients, doctors and other CF team members easy access to expert knowledge and advice for cystic fibrosis. www.ecorn-cf.eu

Genetic Alliance UK is the national charity of patient organisations with a membership of over 130 charities supporting all those affected by genetic disorders.www.geneticalliance.org.uk

NHS choices (CF section) NHS information about CF www.nhs.uk/conditions/cystic-fibrosis/Pages/Introduction.aspx

Right now across the UK, there are around 6,500 people in need of an organ transplant, including around 150 children and teenagers. On average three people die every day in need of an organ transplant because there just aren’t enough organ donors.

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Fundraising

We are always amazed and extremely grateful when people go out of their way to raise money for cystic fibrosis services. Some people are motivated by a family member or friend living with CF, and some people have heard about the disease in the press and offer to help.

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