Increased phototoxic burn tolerance time and quality of life in patients with erythropoietic protoporphyria treated with afamelanotide – a three years observational study

Increased phototoxic burn tolerance time and quality of life in patients with erythropoietic protoporphyria treated with afamelanotide – a three years observational study

Abstract Background Erythropoietic protoporphyria (EPP) is an ultra-rare genetic disorder (prevalence 1:150`000) characterized by instant painful phototoxic burn reactions in skin exposed to visible light. Afamelanotide is the first clinically tested therapy effectively increasing the time EPP patie...

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Bibliographic Details
Main Authors: Jasmin Barman-Aksözen, Michèle Nydegger, Xiaoye Schneider-Yin, Anna-Elisabeth Minder
Format: Article
Language:English
Published: BMC 2020-08-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Erythropoietic protoporphyria
Phototoxic reaction
Pain
Phototoxic burn tolerance time
Afamelanotide
Online Access:http://link.springer.com/article/10.1186/s13023-020-01505-6

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http://link.springer.com/article/10.1186/s13023-020-01505-6

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