Hope in Action
— Kristen Wheeden

Main banner for "Hope in Action" by 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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Porphyria Palooza was an educational and uplifting family reunion

My heart is so full, as is my head! Just a few weeks have passed since we held Porphyria Palooza, a gathering organized by the United Porphyrias Association (UPA), where I serve as president. This year’s event brought together patients and caregivers of every type of porphyria, as…

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Let’s Keep Rare Disease Day Momentum Going

Rare Disease Day, observed yesterday, involved many awe-inspiring and well-organized virtual events attended by people from all over the world. This annual day of observance generates awareness about some 7,000 known rare diseases and over 300 million people who live with them. According to Global Genes, about 80%…

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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 isolating and lonely, but on this special day, we are all urged to come together as…

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From Porphyria Caregiver to Rare Disease Advocate

As a caregiver and a rare disease advocate, I find seemingly endless opportunities to transform hope into action. It can be overwhelming because I want to have my heart and my hand in all of them! My primary role is a mom to my son, Brady, who lives with…

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Putting Hope Into Action After My Son’s Porphyria Diagnosis

On a bright day in mid-2009, I covered my son Brady, then 3, from head to toe and tucked him deeply in my arms. We rushed into a new doctor’s office — our potential diagnostic superhero — to discover what was causing my son’s horrific pain. Having been to countless…


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