Cancer Genetics and Prevention

Events

5th International LFS Association Symposium

The 5th International Li-Fraumeni Syndrome Association Symposium, hosted by Dana-Farber Cancer Institute, will be held on October 3 - 4, and October 10 -11, 2020. The symposium promises to deliver the most recent advances in LFS cancer research, treatments, and patient advocacy, conducted through global collaboration to provide the best of care and hope possible to all those living with LFS and their families. Registration is free for patients and families. Register here.

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

• Patient Support Resources at Dana-Farber Cancer Institute
• Doctor-approved patient information from the American Society of Clinical Oncology (ASCO)
• LFSA (Li-Fraumeni Syndrome Association)
• Living LFS
• NCI LiFE (Li-Fraumeni Exploration) Research Consortium
• NORD (National Organization for Rare Disorders) (limited information)
• FORCE (Facing Our Risk of Cancer Empowered) — BRCA, TP53
• Bright Pink