Evaluating quality of life tools in North American patients with erythropoietic protoporphyria and X‐linked protoporphyria

Background Erythropoietic protoporphyria (EPP) and X‐linked Protoporphyria (XLP) are rare photodermatoses presenting with severe phototoxicity. Although anecdotally, providers who treat EPP patients acknowledge their life‐altering effects, tools that fully capture their impact on quality of life (QoL) are lacking.