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 (Q...

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Dettagli Bibliografici
Pubblicato in:JIMD Rep
Autori principali: Naik, Hetanshi, Overbey, Jessica R., Desnick, Robert J., Anderson, Karl E., Bissell, D. Montgomery, Bloomer, Joseph, Bonkovsky, Herbert L., Phillips, John D., Wang, Bruce, Singal, Ashwani, Balwani, Manisha
Natura: Artigo
Lingua:Inglês
Pubblicazione: John Wiley & Sons, Inc. 2019
Soggetti:
Research Reports
Accesso online:https://ncbi.nlm.nih.gov/pmc/articles/PMC6850979/
https://ncbi.nlm.nih.gov/pubmed/31741822
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1002/jmd2.12052
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