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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Detalles Bibliográficos
Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley & Sons, Inc. 2019
Materias:
Research Reports
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6850979/
https://www.ncbi.nlm.nih.gov/pubmed/31741822
http://dx.doi.org/10.1002/jmd2.12052

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6850979/
https://www.ncbi.nlm.nih.gov/pubmed/31741822
http://dx.doi.org/10.1002/jmd2.12052

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