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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Dades bibliogràfiques
Publicat a:JIMD Rep
Autors principals: 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
Format: Artigo
Idioma:Inglês
Publicat: John Wiley & Sons, Inc. 2019
Matèries:
Research Reports
Accés en línia: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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