LI-FRAUMENI SYNDROME

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

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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

In 2002, I noticed a lump on the innerside of my upper left leg. The doctor thought of scar tissue caused by a mosquito bite, according to him nothing worrisome. I didn’t trust it and insisted on visiting a specialist. After some discussion he reluctantly issued a referral letter for the plastic surgeon. He clearly thought I was an instigator. The specialist cut out the lump and stitched me back up. After a week, I received a phone call from … read more

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