In November 2010, a workshop focusing on Li-Fraumeni syndrome (LFS) was held at the National Cancer Institute (NCI) of the National Institutes of Health (NIH) in Bethesda, Maryland. LFS patients and family members were brought together for the very first time, most of whom had no idea how to reach others living with LFS. Following the family advocacy session, twelve of us embarked on a mission–to bring families, researchers, and clinicians together, all of whom are interested in understanding LFS, identifying the best LFS treatments and LFS screening protocols, and spreading awareness of LFS and advocating for our community, with the hope that someday we’ll be part of the cure for Li-Fraumeni syndrome.

We at Li-Fraumeni Syndrome Association (LFSA) are people like you; we wonder how one family could be plagued with so many genetic cancers. We have seen generation after generation affected by hereditary cancers, but only recently have we learned why. Through the LFSA, we hope to educate and raise awareness of this rare condition. Examples of our past, current, and future R.E.A.C.H initiatives at the LFSA include:


  • Establishment of a Scientific Advisory Board to encourage and support additional advancements in LFS research.
  • Establishment of a Medical Advisory Board comprised of the top LFS researchers and providers in the world.
  • Support research that will directly impact the screenings and treatments of those with LFS.


  • Exhibit at industry annual conferences to educate and spread awareness of LFS and the services of the LFS Association.
  • Along with our partners at the National Cancer Institute and the LiFE consortium, we’ve initiated efforts to educate the insurance industry the benefits of whole-body MRIs.
  • Educate US Senators, Congress, and other legislative staff on Capitol Hill regarding issues of concern for LFS patient families.
  • Webinars of various topics of interest are provided for our LFS patient families by top investigators in their fields. Reference our “Patient Support” tab to access our past webinars.


  • Co-sponsored by National Cancer Institute, May is now recognized as International Li-Fraumeni Syndrome Awareness Month and May 3, 05/03, representing TP53 as International Li-Fraumeni Syndrome Awareness Day.
  • A model of international chapters each co-chaired by a medical professional and LFS family member along with a youth coordinator has been established to advocate for the LFS community across the globe.
  • LFS Awareness brochures have been created and distributed to those who wish to educate others and spread the word.
  • A Genetic Counseling Advisory Group has been established, a team who has worked tirelessly on providing services and products for the LFS community, including a Youth Awareness brochure, a resource for Frequently Asked Questions, and more.


  • Conferences are hosted for families to meet and support one another, and the most current LFS information presented by top international LFS researchers is shared at our LFS Association Symposiums.
  • Youth Programs, such as our inaugural Youth Workshop held in Salt Lake City in August 2017 and subsequent meetings in Boston at the Dana-Farber Institute and in New York City at the Memorial Sloan Kettering Cancer Center, have been held to educate and empower our youth with LFS. Other meetings and activities are also held virtually to specifically support our youth. Please reference our Youth Program to register for updates and receive our Youth Newsletters (also available under the “News and Information” tab).
  • LFS family services and resources are provided, such as summer camp experiences. One resource where you can begin your search for summer camps is Children’s Oncology Camping Association, International.
  • A social network has been established to bring the community together in powerful ways. Visit our social media pages to connect with us on Instagram, LinkedIn, Facebook, and Twitter.  We also have a private, online patient support Facebook group, Voices of LFS.


  • Ongoing fundraising efforts and grants are top priority to support our future initiatives and work toward a future without LFS.
  • We endeavor to foster hope in all those affected by LFS with every engagement, every research project, every new medical finding, every new protocol, every step that brings up one step closer to finding a cure.

Please do not hesitate to contact us at if you have any questions or suggestions, or if you just want to reach out to someone who understands, email