Erythropoietic protoporphyria and X-linked protoporphyria (collectively referred to as EPP) research hub

Erythropoietic protoporphyria life impact and genetic health trajectory (EPP LIGHT): a survey of adults and adolescents in Europe living with EPP

This study is gathering information through an online survey about how living with Erythropoietic Protoporphyria (EPP) or X-linked Protoporphyria (XLP) affects people in Europe. It looks at daily life, symptoms, and healthcare, helping us understand the condition better for future improvements.