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.