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.

Facebook Posts

Genetic Counselor Awareness Day: As a genetic counselor, there can be many different roles or specialties . Some Counselors go into research, learning about diseases and how people cope with them, some educate patients on specific lifestyle areas like self- care and nutrition while others fill a more supportive role of helping patients understand their genetic risks, testing options and stress management. ... See MoreSee Less

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Genetic Counselor Awareness Day: We are extremely grateful that at the First Annual Living LFS Family Camp, we had several Genetic Counselors join us to help our LFS families with topics such as an Intro to LFS and Genetics, Coping with LFS, Parenting with LFS, and Nutrition and Self Care. ... See MoreSee Less

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Genetic Counselors are part Counselor, part Geneticist and all awesome. They can help you understand tricky genetics, decide on lifestyle and testing choices that are right for you and your family and they can help you live your best life with LFS, or any other genetic condition. ... See MoreSee Less

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Latest Blog Posts

By Andi Last I took this photo and wrote the following in May of 2019, on my 10 year anniversary of moving home to San Diego from Australia. As I wrote it, I was awaiting the results of yet another mammogram. I find that gathering feelings of hope and gratitude helps me manage scanxiety – and every day of living with LFS. The results of the mammogram were benign. _____ In the past ten years, I’ve developed countless lines around my eyes and grey in my … read more

What is Metformin? Metformin is an oral medication that decreases the amount of sugar made in the liver, helps the body use sugar and recognize the insulin receptors again. First created from French Lilac in the 1920’s to help manage diabetes, Metformin was put aside when insulin was developed. Decades later, in the 50’s the French began clinical trials and Metformin eventually became widely used in Canada, the UK and in the US during the mid 90’s to treat type … read more