LI-FRAUMENI SYNDROME

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

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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.

Facebook Posts

Not THE tumor suppressor gene..TP53...but a tumor suppressor gene! Good stuff. ... See MoreSee Less

It's hard making friends, especially if you're a cancer gene.

(Reposting with a correction.)

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Latest Blog Posts

  Women with Li-Fraumeni Syndrome have close to 100% chance of developing cancer in their lifetime. About half of all these cancers develop before age 30 and about 50% of the risk is due to breast cancer. The risk of breast cancer by age 60 for women is 85%.  So, what’s a lady mutant to do? Understand YOUR Risk. Not everyone’s risk is the same. Meeting with a practitioner, ideally a Genetic Counselor familiar with LFS is a good way … read more

Genetics are very complicated. There are so many factors that influence how we become who we are on the cellular level and beyond. A good friend of mine always points out- there are many ways to make a family. Those of us in the support group learned that as we have become a family of misfit mutants. Yet even within our small numbers, there are the rare of the rare. I remember at the conference in Boston, talks turned to … read more