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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There are over 7000 rare diseases, including LFS. 95% of them don’t have FDA approved drugs. This week we’re learning about the legislation that’s going through congress to help move the needle.

Today we’re being educated on rare disease legislation and taught how to convince our representatives to support these bills.

Most importantly, we’ll be telling stories. Our stories. Your stories. Telling our representatives what it’s like to live LFS and why we need their support.

Thank you Tanya Lamons, Lon Humpert, Greg Harper, and Treva Vetter and all those working in the background for lending your time to our community this week!

#rarediseaseweekonthehill #rarediseaseweek #rarediseaseweek2020 #lifraumeni #lifraumenisyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #p53 #tp53 #tp53gene #cancergenetics #geneticcancer #geneticmutation #rarediseases #cancerfighter #Living #RareDC2020 ... See MoreSee Less

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Living LFS is in Washington ready for Rare Disease Week!
#LiFraumeni #LiFraumeniSyndrome #livinglfs #iamlivinglfs #lifraumenisyndromeawareness #P53 #TP53 #tp53gene #cancergenetics #geneticcancer #geneticmutation #rarediseases #cancerfighter #RareDiseaseWeek #rarediseaseweek2020 #rarediseaseweekoncapitolhill
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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