LI-FRAUMENI SYNDROME

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

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EDUCATE

Learn from our blog contributors. Personal stories, latest research, and mutant humor!

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COMMUNITY

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

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SUPPORT GROUPS

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 few years ago, Brandi shared her experience of sarcoma with us. In 2009, she was only 29, 5 months pregnant with her daughter when she noticed a lump on her thigh. Sarcoma. Only about 1% of all cancers are sarcomas. Sarcomas can be found in any connective tissue, bone, blood vessels, fat, muscles or nerves. Many sarcomas(like Brandi’s) present as a painless lump but as they grow they can push on nerves and cause pain. LFS increases the risk … read more

5 years ago, I learned my Breast Cancer metastasized. I was terrified, angry, but not surprised. A close group of friends I met through the LFS Support Group reassured me that this was not the end, it was a beginning. We met for the first time in person November 2013, in the bar of the Longwood Hotel, Boston. We were the unruly gigglers in the back two rows of the LFS Conference. We reached out to others on breaks, letting … read more