The Trust was established by the family of George Pantziarka, who suffered from Li Fraumeni Syndrome (LFS), and who died in on 25th April 2011 after suffering from his third cancer. It was only after George had been diagnosed with his third cancer that he was tested and found to be suffering from LFS. It is currently there only organisation devoted to LFS and related conditions in the UK.
We feel that more needs to be done to help people with LFS . As a start we know from our own experience that there is a need to:
- Increase understanding of the condition among sufferers and their families
- To support individuals and families with the condition
- To increase awareness of the condition among doctors and to increase the rate of TP53 testing
- To promote research into the condition and to look for treatments
- To foster a feeling of community and to end the isolation that currently exists amongst sufferers and their families
This website aims to provide a central forum so that sufferers, their families and friends, doctors and researchers can all make contact. If you have LFS or similar disorder, or you have a child or family member affected, then please make contact. Please register on the forum and introduce yourselves – you’ll be most welcome.