Li-Fraumeni Syndrome and TP53 Center Events and Resources for Patients

Questions? Contact the Li-Fraumeni Syndrome and TP53 Center


Contact the Li-Fraumeni Syndrome and TP53 Center


For information on pediatric cancer genetic risk, learn about the Pediatric Cancer Genetic Risk Program at Dana-Farber/Boston Children's.

Advocacy Groups

Li-Fraumeni syndrome (LFS) is a hereditary condition which is often associated with a pathogenic or likely pathogenic variant (mutation) in the TP53 gene (TP53 positive genetic test result or TP53+ result). LFS advocacy groups provide patient and family support resources. We urge individuals affected by LFS to find out more about these groups and the activities they sponsor.


The LFS Association (LSFA) has a mission to provide a wide range of information, advocacy, and support services for individuals and families with Li-Fraumeni syndrome. They support a consortium of researchers, medical providers, and caregivers to further research and promote optimal care for the LFS community. The LFSA is a community of Li-Fraumeni syndrome families and survivors, with a vision to serve as building blocks of a future without LFS and to bridge the gap between patients and professionals who have the same goal.


Living LFS has a mission to encourage, empower, and educate those living with Li-Fraumeni syndrome by connecting them with care, resources, and others who are Living LFS. The core values shared by Living LFS are Community, Compassion, Respect, Integrity, and Levity.

Online Resources

More on Genetic Testing and Genetic Risk for Cancer

Dana-Farber cancer genetics specialists provide answers to a variety of questions about specific genetic tests, interpreting test results, and genetic risk for cancer.

Genetic Testing at Dana-Farber Cancer Institute

Webchat: The Latest in Genetics and Women's Cancers

Cancer Conversations Podcast: Genetics and Women's Cancers

Cancer Mythbusters Podcast: Cancer Genetics and Prevention

Support the Li-Fraumeni Syndrome and TP53 Center

Your donation can help advance research and care provided to people with Li-Fraumeni syndrome and TP53+ results. Your support can contribute towards:

  • Supporting our landmark research on the use of whole-body MRI to detect pre-cancers before they spread
  • Creating lasting educational materials and tools for the community
  • Hosting Fellows focused on Li-Fraumeni syndrome clinical research
  • Hiring Patient Navigators to assist and support patients more closely; a Clinical Coordinator to support Center operations and clinical and support staff to manage Li-Fraumeni syndrome patient clinical care and research study appointments
  • Developing a family clinic where multidisciplinary staff can help to manage the complex issues affecting families with LFS and TP53+ results
  • Launching new programming, such as patient-focused support groups, events, and educational opportunities

Naming opportunities for the Center are also still available. For more information, contact Wes Norton at