LI-FRAUMENI SYNDROME

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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Living LFS means extra screening for potential cancers. We try to avoid radiation as much as possible. We use MRI a lot. Researchers are working on protocols for us ( like the Toronto Protocol for screening)and some can get Whole Body MRI, others have scans broken up into hours of time in the machine. ... See MoreSee Less

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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

  My name is Kathy Higgins. I have lost 4 family members to LFS.   KERRY Kerry was first diagnosed with cancer at the age of 12, an osteosarcoma in her thigh. She received chemo and had multiple operations on her leg. Kerry also had several small cancer issues over the years, skin spots on her face and back. She was not diagnosed with LFS at the time because the year was 1995, and LFS was just being discussed. She … read more