Will You Join Us on Rare Disease Day 2022?
Rare Disease Day on Feb. 28 is a critical day, although every day is Rare Disease Day when you are living with or caring for someone who has one. The experience is often…
Hope in Action — Kristen Wheeden
Life changed for Kristen Wheeden when her youngest son, Brady, was diagnosed with erythropoietic protoporphyria in 2009. Kristen set out to learn as much as she could from both patients and doctors about porphyria. She has great hope for improved quality of life for patients living with porphyria, yet firmly believes that hope is ineffective without action. That is her motivation to act as a fierce advocate for porphyria patients and families and to support critical research. Hailing from Bethesda, Maryland, she enjoys life with her husband, three sons, and two dogs. Kristen serves as the president of the United Porphyrias Association.
Featured Post
Fighting for change on Capitol Hill
Last week was a rallying cry for rare disease patients, their families, and other advocates to make their voices heard. I spent time on Capitol Hill in Washington, D.C., standing alongside fellow advocates for…
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