Cystic Fibrosis Trust

Introducing the Cystic Fibrosis Trust

Since the founding of the CF Trust in 1964, we have been working to improve the lives of people with CF, raise the profile of CF and fund research into a cure.

Our objectives are to:CFT Logo

Fund medical and scientific research to develop a cure and provide effective treatments for Cystic Fibrosis.

Ensure appropriate clinical care for those with Cystic Fibrosis.

Provide information, advice, support and, where appropriate, financial assistance to anyone affected by Cystic Fibrosis.

Who we are

The Cystic Fibrosis Trust is the UK's only national charity dedicated to all aspects of Cystic Fibrosis (CF). We fund research to treat and cure CF and aim to ensure appropriate clinical care and support for people with Cystic Fibrosis.

Our Head Office is in Bromley, Kent, but we have fundraisers and Expert Patient Advisers based throughout the UK.

In addition to our staff, we have Research, Medical and Gene Therapy Advisory Committees who make recommendations to our board of Trustees for final approval of funding projects that are of important and/or immediate clinical benefit to those with Cystic Fibrosis.

Our work is also assisted by Patrons and other celebrity supporters, along with Ambassadors who have CF themselves.

What we do

The Cystic Fibrosis Trust is the UK's only national charity dedicated to all aspects of Cystic Fibrosis. The CF Trust invests in medical research to treat the symptoms of CF and to find an effective treatment by correcting the basic genetic defect. The CF Trust also provides information, advice and support to families affected by Cystic Fibrosis and aims to ensure that people with CF receive appropriate healthcare.

All clinical and research projects are scrutinised by an international panel of leading doctors and scientists. This ensures the CF Trust invests in research that will have imminent and/or important clinical benefit to those with Cystic Fibrosis.

Research
The CF Trust is one of the leading investors in CF research in the world. Research funded addresses the serious symptoms and complications of the disease, which include infection, inflammation, malnutrition, liver failure and osteoporosis. It is vital for people with CF to remain as healthy as possible, both in the short term and to gain from the long-term benefits of gene therapy and other potential treatments. The CF Trust invests around £4 million each year in research. Around three quarters of this is for gene therapy research.

Gene therapy
Since the identification of the gene that causes CF in 1989, much time and money has been invested to discover a way to correct the basic genetic defect or add a healthy copy of the faulty gene.

The UK CF Gene Therapy Consortium based in London, Edinburgh and Oxford have developed a gene therapy product, which they are putting through tests for safety and efficiency before multi-dose clinical trials, which are planned for 2008. This is the first time anywhere in the world that CF gene therapy has been studied in this way. The CF Trust invests £3 1/2 million each year in the Consortium and the clinical trials will cost at least £6 1/2 million. A more precise figure will be known following the single dose pilot study.

Controlling Infection and Inflammation
Until some form of gene correction becomes available, it is essential to find more effective means of reducing lung infection and damping down tissue-damaging inflammation.

Clinical Support
Cystic Fibrosis is a complex disease requiring considerable specialist treatment. In the last fifteen years, the Trust has helped to set up and staff 41 special CF centres throughout the UK. The CF Trust also runs a peer review service for CF clinics and provides funding to train the top CF doctors of the future through consultant training at specialist CF centres.

Family Support
Our Support Service was established in 1989 to provide essential support to people with CF and their families. This support begins at diagnosis and continues through adolescence to adulthood. The CF Trust provides confidential helplines for general enquiries about CF, benefits advice and welfare grants.

Expert Patient Advisers
The Expert Patient Advisers are experts in the care that people with CF should expect and use their knowledge to influence anyone who is involved with the commissioning or provision of care and services for people with Cystic Fibrosis.