About Cystic Fibrosis (CF)

What is CF?

Cystic Fibrosis (CF) is the UK's most common life-threatening, inherited disease and affects more than 7500 babies, children and young adults.

Cystic Fibrosis is a genetic disease that affects a number of organs in the body (especially the lungs and pancreas) by clogging them with thick, sticky mucus.

At present there is no cure for CF, but the faulty gene has been identified and doctors and scientists are working to find ways of repairing or replacing it. One of the main objectives of the CF Trust is to fund this work.

People with CF are living longer than ever before. Until the 1930s, the life expectancy of a baby with CF was only a few months. Today the average life expectancy for someone with CF is around 31 years.

Who is the CF Trust?

The Cystic Fibrosis Trust is the UK's only national charity working to fund research into a cure and to ensure appropriate clinical care and support for people with Cystic Fibrosis (CF). Founded in 1964 the Trust's objectives are to:

Fund medical and scientific research to find a cure and provide effective treatments for Cystic Fibrosis;
Ensure appropriate clinical care for those with Cystic Fibrosis; and
Provide information, advice, support and, where appropriate, financial assistance.

Work that the CF Trust is doing

The Cystic Fibrosis Trust is committed to carrying out research, providing clinical support and giving information advice and support to help improve the lives of people with CF. The Trust supports ground-breaking research aimed at curing and treating CF. It currently spends Ł1 million a year on general medical and scientific research. To help improve the clinical care CF patients receive it has helped set up and staff 45 specialist CF treatment centres throughout the UK in the last 15-years. It also sets national standards on clinical care, provides a UK CF Clinical Database and measures levels of service providing. The Trust provides a confidential 9am-5pm helpline service for advice and support on any aspect of Cystic Fibrosis and information and advice to sufferers and their families on benefits, financial assistance and welfare grants.

Gene Therapy

The Cystic Fibrosis Trust is currently investing over Ł3 million a year in a programme of research into gene therapy to make it a reality in the foreseeable future. The Trust has brought together over 40 of the UK's leading scientists to drive forward this research.

Since the identification of the gene that causes CF in 1989, research is increasingly focused on correcting that basic genetic defect.

Researchers are encouraged by early progress in both areas. CF Trust-funded research projects have already found clinical evidence that gene therapy may work in CF patients. Several drugs are currently being considered for clinical testing.

Researching for the future?

The aim of the research is to understand, treat and cure Cystic Fibrosis. With over 25 research projects underway at any one time, the CF Trust is the major funding provider of medical and scientific CF research in the UK.

Past achievements

The Cystic Fibrosis Trust has been instrumental in many of the world's key CF research discoveries. Over the last decade or so, CF Trust funded research has led to an important tool for testing new gene therapies and for understanding how the CF protein works. The Trust's researchers identified Burkholderia cepacia and the ways in which it is acquired. This led to the preventative procedures to stop transmission from one person to another. Leading UK CF scientists were the first to develop and successfully test gene therapy using liposomes as the delivery system.

For more information please visit the Cystic Fibrosis Website at www.cftrust.org.uk