RAO Network

Li-Fraumeni Syndrome Association

Youth holding a banner that says “LFSA Youth Program” pose in front of a duck boat in Boston
Li-Fraumeni Syndrome Association hosts its 2nd LFSA Youth Workshop. The group represents youth from six countries who spent an afternoon touring Boston, MA, and learning at Dana Farber Cancer Institute. Photo courtesy of Li-Fraumeni Syndrome Association.
Li-Fraumeni Syndrome Association hosts its 2nd LFSA Youth Workshop. The group represents youth from six countries who spent an afternoon touring Boston, MA, and learning at Dana Farber Cancer Institute. Photo courtesy of Li-Fraumeni Syndrome Association.

Thinking differently and creating change

Knowledge is power, and working together with other groups, professionals, and volunteers wanting to drive progress against a disease can make all the difference in the world.

Jennifer Perry, president of Li-Fraumeni Syndrome Association (LFSA), is one such person who stepped up to make a difference. She’s a breast cancer survivor who was diagnosed with Li-Fraumeni Syndrome (LFS) 10 years ago. Each of her two young daughters also has an LFS diagnosis. LFS is a rare, inherited disorder, which leads to a higher risk of developing certain cancers. These cancers tend to occur at younger ages in individuals with LFS than in the general population. The types of tumors most frequently seen in LFS include bone and soft tissue cancers, breast cancer, brain tumors, and cancer of the adrenal gland. There’s no standard treatment or cure. 

To Jennifer and LFSA, collaboration is key. Jennifer says, “Never be afraid of the challenge to make a difference.” The organization is hopeful that its participation in the Rare As One Network will enable more effective collaborations with medical professionals and the LFS patient community to further research and promote optimal care.

Never be afraid of the challenge to make a difference.

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