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Patient Support & Advocacy

On November 2010, a workshop focusing on Li-Fraumeni Syndrome (LFS) was held at 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. Twelve of us assembled following the family advocacy session, exchanged contacts, and embarked on a mission. The mission is to bring families, researchers, and clinicians together, all of whom are interested in the understanding of LFS, to identify the best LFS treatments, LFS screening protocols, LFS advocacy & awareness, and hopefully some day, a cure for Li-Fraumeni Syndrome.

Click here to view the webcast from the conference.

We here at Li-Fraumeni Syndrome Association 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 LFSA, we hope to educate and raise awareness of this rare condition. Those with LFS have similar stories, but despite the rarity of this disease, the people who face it have a physical and a spiritual strength that is truly unique.

Examples of our future initiatives at LFSA include:

  • Research support that will directly impact the screenings and treatments of those with LFS.
  • Conference hosting for families to meet, support each other and share the most current LFS information in a personal setting.
  • LFS family services, such as support camps.
    Here is one place that you can begin your search for summer camps:  Children’s Oncology Camping Association, International
  • Private website discussion forum to share thoughts, questions and stories with others living with and affected by LFS.
  • Grants and fundraising to support our future initiatives.

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

Know that we are also available on Facebook and Twitter.

Living LFS is another dedicated community resource of LFS families that offers public and private online patient support to those affected by LFS.


LFS Association

We are families, like you who have been devastated by the effects of Li-Fraumeni Syndrome, a hereditary cancer predisposition syndrome. Our hopes are to educate, raise awareness and find better screening programs and treatments for LFS.


Medical Resources

We've compiled a list of doctors available to
answer your questions, LFS support and
treatment. They specialize in many different
areas, which have been listed with their


LFS News

WETB’s Gayle Ong was one of several reporters covering the event and story of LFS and Mo Songs for Kerry.

Read More…

Community Events

Carly Grant – Mohawk Hudson River Marathon 2017
Support Carly and the Li-Fraumeni Syndrome Association as she raises money and trains for the Mohawk Hudson River Marathon on October 8th!


LFS Webinars

Check out our library to watch past LFS
webinars, and to find out about
upcoming webinars!

Learn more...

LFS Awareness Brochure

Myriad Genetics is proud to partner with LFSA to launch the global LFS Education and Awareness Campaign!