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.
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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.
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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.