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

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It's very difficult and sometimes lonely to face a rare syndrome. Meet the Living LFS community.

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Brain tumor risk is much higher for those with LFS. Certain childhood brain tumors, like choroid plexus tumors are often associated with Li-Fraumeni Syndrome. ... See MoreSee Less

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On Thursday and Friday Sept 14 and 15, Living LFS - Li-Fraumeni Syndrome board member Andi Last attended the Sixth Annual Global Genes Rare Patient Advocacy Summit at the Hotel Irvine in Irvine, California. This is her photo recap of the event! #2017GGSummit ... See MoreSee Less

On Thursday and Friday Sept 14 and 15, @[685322511549568:274:Living LFS - Li-Fraumeni Syndrome] board member @[739352208:2048:Andi Last] attended the Sixth Annual Global Genes Rare Patient Advocacy Su...

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Motivation for Monday: With Li-Fraumeni Syndrome, we often feel so much is out of our control. Tiffany shared her thoughts on how the diagnosis empowered her to live better. ... See MoreSee Less

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  D’Ana and her sister Courtney helped found Living LFS. They soon became our mutant sisters as we worked to bring those living LFS together. D’Ana lived fully and completely and shared her positive energy and laughter with anyone she ran across from childhood friends, to chemosabes(chemo friends) to her mutant family. The way D’Ana lived is very much the foundation of Living LFS and refected in our core values: Community, Compassion, Respect, Integrity and Levity. D’Ana had brilliant ideas … read more

Fannie learned some very powerful lessons from her mother through her breast cancer battles. She learned about self awareness, how to advocate and how she chooses to live despite living with LFS.  Thank you Fannie for sharing your memories of your mother and her strength with us.   My mom never knew she had Li-Fraumeni Syndrome. I was the first one to get genetic testing done. My mom died of breast cancer when I was 21 years old; she was … read more