Our annual conference takes place each September and brings together people with Li Fraumeni Syndrome, doctors and researchers from across the UK and beyond. It provides an opportunity to find out about the latest clinical trials and research studies and to meet others dealing with LFS. It is held in central London in September and is completely free. Lunch is provided, and there is an opportunity to stay for an informal drink and chat afterwards. Tickets are made available on Eventbrite a few months in advance, and the exact date plus programme previews appear in our quarterly newsletter.

Please do join us in September!

Meanwhile, some of the presentations from our previous conferences are available by the year.

Our 2025 conference included updates from the MILI trial, the LiFTS study, data from Manchester on radiotherapy and LFS, an introduction to the new data.tp53.org.uk databases and an outline of the forthcoming MyTP53 study from Oxford University. Abbi Butler, Victor and Katie Marston were our voices of LFS.

Topics included a report from Great Ormond Street Hospital on children with LFS, results from the SIGNIFIED trial at the Royal Marsden, updates from MILI and LiFTS, LFS early cancer detection and an introduction to the MyCancerNavigator service. Our voices of LFS were Aimee Teresa and Christ Steven.

The packed program covered the MILI trial, the SIGNIFIED whole-body MRI trial, LiFTS, incidental findings from whole-body MRI and LFS care and research for the North of England. Our voices of LFS for 2023 were Patricia Walsh and Nina Irwin.

The presentations covered LFS and the pre-cancerous niche, the metformin in LFS study (MILI), the role of the nurse specialist in LFS care, LiFTS and the ICED liquid biopsy trial. Our voices of LFS for 2022 were Laura Forrest and Ava Phillips.

In 2021 we had an update on the NHS LFS screening protocol, and update on the development of the MILI trial, managing the psychological impact of LFS, proton beam therapy and fake miracle cures for cancer. The voices of LFS were Andreea Alexandra, Aimee Teresa and Greg Harper.

Topics included the NHS LFS screening protocol, liquid biopsies to catch cancer early, reproductive options in LFS, the Great Ormond Street LFS clinic and discussion of a clinical trial to reduce cancer risk. Our voices of LFS were Jonathan White and Rita Magenheim.

The conference covered NHS screening, the SIGNIFY study, p53 isoforms and LFS, drugs to reshape mutant p53, whole-body MRI and recent advance in cancer treatments. Our voices of LFS were Michelle Brady, Elizabeth Sam and Ian Hughes.

Speakers covered practical approaches to coping with risk, common p53 mutations and cancer risk, drug repurposing for cancer, latest data on LFS and whole-body MRI and Q&A on LFS. Our voice of LFS was Lara Veitch.

Our first conference. Topics covered included the pre-cancerous niche in LFS, the psychological impact of whole-body MRI screening, what we know and don’t know about LFS, financial planning and LFS and results from the SIGNIFY whol-body MRI trial. Our first voice of LFS was Lara Veitch.