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Sarah B Tompkins

Ehlers-Danlos Syndrome & Hypermobility Spectrum Disorders PAtient Advocate

Sarah lives in Bellevue, Washington with her husband, Troy, & their Jack Russell, Russell Wilson; she is an Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders (EDS/HSD) & Rare Disease Patient Advocate.  

 Sarah has worked to help pass such Rare Disease legislation as STAT Act, 21st Century Cures, and NIH & FDA Rare Disease appropriations legislation. Sarah was nominated in 2019 for The Rare Voice Awards Nomination for Federal Patient Advocacy for her work advocating for such legislation and causes as 21st Century Cures and establishing Rare Disease Day in Washington State Feb. 28th, 2015. Most recently, in July 2020, Sarah was awarded the title, crown, and sash of Ms. Wheelchair Pacific Coast USA 2021 for the Ms. Wheelchair USA pageant running on her platform that ‘all abilities are beautiful’, and will be participating and competing in next year’s Ms. Wheelchair USA 2021 advocating for invisible disabilities and conditions like EDS and Hypermobility. 

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