EPISODE · Jun 25, 2026 · 36 MIN
Emerging from a Life in the Shadows
from RARECast
Erythropoietic protoporphyria (EPP) is a rare, inherited metabolic disorder that triggers a toxic photochemical reaction in skin when exposed to light. A short time in the sun for someone with the condition can result in excruciating, second-degree–like burns and leaves patients sidelined from normal outdoor activity. Craig Leppert, who has EPP, saw his childhood shaped by constant vigilance against sunlight, years-long diagnostic delay, and the social isolation of a condition few clinicians recognize. Leppert, founder of the non-profit Shadow Jumpers, discusses his experience with EPP, the benefits he’s had as a participant in a clinical trial of an experimental therapy to treat the condition, and the potential for transforming what’s possible for people living with the disorder.
What this episode covers
Erythropoietic protoporphyria (EPP) is a rare, inherited metabolic disorder that triggers a toxic photochemical reaction in skin when exposed to light. A short time in the sun for someone with the condition can result in excruciating, second-degree–like burns and leaves patients sidelined from normal outdoor activity. Craig Leppert, who has EPP, saw his childhood shaped by constant vigilance against sunlight, years-long diagnostic delay, and the social isolation of a condition few clinicians recognize. Leppert, founder of the non-profit Shadow Jumpers, discusses his experience with EPP, the benefits he’s had as a participant in a clinical trial of an experimental therapy to treat the condition, and the potential for transforming what’s possible for people living with the disorder.
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Emerging from a Life in the Shadows
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