Patient-reported survey shows median diagnostic delay of 6 years in erythropoietic protoporphyria, highlighting need for improved specialist care and treatment.
Erythropoietic protoporphyria (EPP) is a rare photodermatosis associated with delayed diagnosis and limited access to specialist care. In this patient-reported survey, we found a median diagnostic delay of 6 years, with many participants expressing unmet needs in follow-up and treatment, and high interest in emerging therapies. These findings highlight the importance of early recognition and improved referral pathways to optimise care for individuals with EPP.
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Bell et al. (2026) studied this question.
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