Patient Support & Advocacy | Li-Fraumeni Syndrome Association

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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 (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. 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 past, current, and future initiatives at the 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 presented by top international LFS researchers at our LFS Association Symposiums.  (Click here for our 2016 LFS conference.)
  • Youth Programs, such as our inaugural Youth Workshop held in Salt Lake City in August 2017.
  • LFS family services, such as summer camp experiences
    Here is one place that you can begin your search for summer camps:  Children’s Oncology Camping Association, International
  • Exhibits at industry annual conferences to educate and spread awareness of LFS and the services of the LFS Association.
  • Educate US Senators, Congress, and other legislative staff on Capitol Hill regarding issues of concern for LFS patient families.
  • Provide webinars on various topics of interest for our LFS patient families by top investigators in their fields.
  • Grants and fundraising to support our future initiatives.

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

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.