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What the Cystic Fibrosis Trust can do for you

The Cystic Fibrosis Trust funds medical and scientific research aimed towards understanding, treating and curing Cystic Fibrosis. It also aims to ensure that people with CF receive the best possible care and support in all aspects of their lives. To do this we have set ourselves a fundraising target of £5 million per year.

In addition to this, the CF Trust is committed to raising a further £15 million over five years. This funds pioneering research into gene therapy with the aim of correcting the basic genetic defect.

The CF Trust has established branches and groups throughout the UK to provide support and advice for those affected by CF, their families and their carers. 

We also campaign to improve the clinical and social care of those affected by CF, as well as raising public awareness of the condition.

What we do 

Every year, the Cystic Fibrosis Trust is committed to spending at least £4.5 million. This money funds medical research, clinical support and family care.

All clinical and research projects are scrutinised by an international panel of leading doctors and scientists. This ensures that every pound is distributed to areas of most need and potential scientific impact.

Research


CF Trust-funded research leads the field in the search for a cure. The research also addresses the serious symptoms and complications of the disease, which include infection, inflammation, malnutrition, liver failure and osteoporosis. It is vital for CF patients to remain healthy as possible, both in the short term and to gain from the long-term benefits of a cure. We are currently committed to spending £3.4 million on research projects.

Since the identification of the gene that causes CF in 1989, research is increasingly focused on correcting that basic genetic defect. Two approaches are being explored:

  •  Gene therapy - replacing the faulty gene with a healthy copy.

  •  Protein repair - repairing or replacing the faulty protein, which is  created by the defective gene.

 
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.


CF Support Service

The wider social impact of CF on family life means that practical advice and emotional or financial support should be easily available.

Coping with CF at the time of diagnosis and other stressful occasions can be challenging. There are many issues involved such as how to get a toddler to take medication, what to tell your child's school, or how to deal with resistance to physiotherapy.

The CF Trust's Regional Support Co-ordinators provide practical and emotional support, information and help with the benefit system. These are professional full time workers and trained volunteers, many of whom are parents of CF children.

However, the most pressing burden is often financial. The Trust may be able to help by providing a grant or accessing grants from other sources. Contact the Support Service for further advice.

Contact details

Cystic Fibrosis Trust
11 London Road
Bromley
Kent
BR1 1BY

Telephone - 020 8464 7211
Fax - 020 8313 0472
Out of hours - 020 8464 0623

 We are indebited to the Cystic Fibrosis Trust for their help in compiling this section.