Joining forces is crucial to raising awareness of rare diseases
In my column, “Hope in Action,” I write about porphyria and the lived experiences of those affected by this group of ultrarare diseases. But for Rare Disease Day today, I want…
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.
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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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