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

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 patients can...

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Vydáno v:Orphanet J Rare Dis
Hlavní autoři: Barman-Aksözen, Jasmin, Nydegger, Michèle, Schneider-Yin, Xiaoye, Minder, Anna-Elisabeth
Médium: Artigo
Jazyk:Inglês
Vydáno: BioMed Central 2020
Témata:
Research
On-line přístup:https://ncbi.nlm.nih.gov/pmc/articles/PMC7437008/
https://ncbi.nlm.nih.gov/pubmed/32811524
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-020-01505-6
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