We are a community of Li‑Fraumeni syndrome families, researchers and care providers. We are the building blocks of a future without LFS.
LFS Association provides a wide range of information, advocacy, and support services for individuals and families with Li-Fraumeni Syndrome. We support a consortium of researchers, medical providers, and caregivers to further research and promote optimal care for the LFS community.
Genetics matter: know your family, know your genes.
LFS predisposes carriers to a diverse range of childhood and adult-onset cancers – some rare, often early onset. Most families with LFS have an inherited pathogenic variant in the TP53 gene – a tumor suppressor gene. Malfunctioning TP53 are involved with most all cancers in the general population.
Helping young people with LFS live their lives to the fullest and stay connected with one another. The LFSA Youth Program is an opportunity for teens and young adults ages 13 to 25 to learn from and engage with experts in the LFS field and connect with other LFS youth to foster friendship and support.
Always at the Heart of What We Do
As families who have been affected by LFS, we all know the significant challenges we have faced and overcome. At the LFS Association we want to share hope, resilience and compassion to all of our LFS families. We are the Faces of LFS…we are LFS Strong.
Honoring & Remembering Our LFS Family.
Forever in Our Hearts.
Information for Providers, Family & Friends
Download or request copies of LFS Awareness literature to share in a practice, clinic or with care providers. Awareness and how we approach our healthcare will save lives.
LFS Awareness Brochure
Genetics can’t be changed, but the way we approach our healthcare can be. Early detection saves lives.
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LFS Youth & Young Adult Brochure
Empowering adolescents and young adults to drive key aspects of their healthcare and decision making.
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Latest News
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Optimizing shared decision-making for risk-reducing mastectomy in women with Li–Fraumeni syndrome using patient-reported outcome measures
Li-Fraumeni syndrome (LFS) researchers in Brazil studied factors in determining quality of life issues for women living with
Attention Young Adults between 18-29 living in the US of A!
Would you like to participate in a research study at the National Cancer Institute that is developing a
LFSA Co-Founder Debbie Soprano Honored by Boston Children’s Hospital
The Li-Fraumeni Syndrome Association (LFSA) is proud to announce that Co-Founder and Board Member Debbie Soprano has
