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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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

“If you were me what would you do?” Working as a nurse, I have been asked this question so many times. It wasn’t until I was the one asking this same question, that I could truly identify with the countless number of emotions hidden behind it. Behind this question is so much more, it is an unsure where to start feeling, a feeling of being scared beyond belief, it is anxiety, it is needing assurance, it is searching for empowerment. … read more

In April 2018, Fannie attended the LFSA REACH International Conference in Toronto. She shares her experience and the impact it has made on her coping with LFS since she’s been home. We are grateful to Fannie for her time and efforts making the Living LFS Exhibit Table a perfect representation of our group. What we can learn when the mind can take a break. Li-Fraumeni Syndrome can be so isolating. It’s a very unique feeling. Being scared all the time … read more