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Kristen is a fierce advocate for porphyria patients and families. Life changed when her youngest son was diagnosed with erythropoietic protoporphyria (EPP), one of eight major types of porphyria. Kristen did a deep dive and learned from experts (doctors and patients) about all the porphyrias. She has great hope for improved quality of life for patients living with porphyria, yet firmly believes that hope is ineffective without action. Kristen lives in Bethesda, Maryland, with her husband and the last of her three almost-grown boys — who is a resilient self-advocate! Kristen serves as the President of the United Porphyrias Association and as the steering committee chair of the Coalition of Patient Advocacy Groups within the Rare Diseases Clinical Research Network.
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 to take a macro view…
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