Erythropoietic protoporphyria life impact and genetic health trajectory (LIGHT) study in Europe: a cross-sectional online questionnaire - Hetanshi Naik; Kristen Wheeden; Susan D. Mathias; Chelsea Norregaard; Adaeze Q. Amaefule; Melanie Chin; Manisha Balwani (Orphanet Journal of Rare Diseases, 2026)