Patient Reported Outcome in EPP

A new retrospective article was published in Genetics in Medicine using a Patient Reported Outcome (PRO) measure related to Erythropoietic Protoporphyria. The publication summarized that: "Patients with erythropoietic protoporphyria (EPP), a severe painful photodermatosis, experience prodromal sensations when exposed to sunlight, which are the 'warning signals' to exit the sun, as prolonged exposure causes an excruciatingly painful phototoxic attack."

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