Rare Disease Week 2021

Treva Vetter at Rare Disease Week 2021

Treva Vetter is a Registered Nurse, survivor, and patient advocate who is living with Li-Fraumeni Syndrome. Treva represented Living LFS during the Virtual Rare Disease Week on Capitol Hill, July 14-22.

Treva advocated for the LFS community to staffers for her members of Congress including Senator Patty Murray, Senator Maria Cantwell, and Representative Adam Smith.

Treva heard patient stories and learned about the financial burden of rare diseases on families and on the nation's economy. Treva also learned about legislation currently making its way through Congress:

View the videos from this year's Rare Disease week on YouTube.

To top it all off, Treva won $1,000 for Living LFS competing in the Rare Disease Week virtual scavenger hunt!

Thank you, Treva, for representing Living LFS and all of us who are living with Li-Fraumeni Syndrome.

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