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:
- The STAT Act, which would accelerate rare disease therapy development, optimize interagency coordination, advance science-based regulatory policies, and facilitate access to therapies. Learn more about the #StatAct
- The BENEFIT Act (Better Empowerment Now to Enhance Framework & Improve Treatments), which would include patient experience data in the benefit risk assessment of new drugs
- The HEART Act (Helping Experts Accelerate Rare Treatments) which would require the FDA to include rare disease experts and staffers in the drug review process
- The Newborn Screening Saves Lives Reauthorization Act would improve newborn screening programs and uniformly test for all recommended disorders.
- The Access to Genetic Counselor Services Act would increase access to and provide Medicare reimbursement for genetic counselor services
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.