Li-Fraumeni Syndrome (LFS) is linked to a mutation in the TP53 tumor suppressor gene.

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Li-Fraumeni Syndrome Support Group

Click here to join a private Facebook support group specifically for those living with LFS. A place to share, ask questions and learn from the experiences of others who are just like you.

Li-Fraumeni Syndrome Family & Friends

Click here to join a private Facebook support group for family members and friends to learn how to support their loved ones who are living with LFS.

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Latest Blog Posts

A woman with Li-Fraumeni Syndrome has almost a 100% chance of getting cancer in her lifetime. Although most of this risk is due to Breast Cancer, LFS women can develop cancer almost anywhere. When cancer metastasizes, spreading from the original tumor to other locations, it is no longer curable.  For many women, with LFS and without, the threat of cancer  recurrence is terrifying and very real. For these women, pink represents that threat. We Need More Than Pink by Katrina … read more

I was diagnosed with a stage 4 Osteosarcoma in my right knee aged 19. It had spread to my lungs and the tumour was the size of a tangerine before it was found. I had to have my right leg amputated above the knee and secondaries removed from my right lung. It was difficult treatment and a new protocol that they hadn’t used in our hospital before. One of the chemo drugs had me hallucinating which was interesting and the … read more