The challenges of living with and managing epidermolysis bullosa: insights from patients and caregivers

BACKGROUND: Little information is available regarding the burden of living with and managing epidermolysis bullosa, including the distinct challenges faced by patients with different disease types/subtypes. METHODS: A 90-question/item survey was developed to collect demographics, diagnostic data, ma...

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Detalles Bibliográficos
Publicado en:Orphanet J Rare Dis
Main Authors: Bruckner, Anna L., Losow, Michael, Wisk, Jayson, Patel, Nita, Reha, Allen, Lagast, Hjalmar, Gault, Jamie, Gershkowitz, Jayne, Kopelan, Brett, Hund, Michael, Murrell, Dedee F.
Formato: Artigo
Idioma:Inglês
Publicado: BioMed Central 2020
Assuntos:
Research
Acceso en liña:https://ncbi.nlm.nih.gov/pmc/articles/PMC6942340/
https://ncbi.nlm.nih.gov/pubmed/31900176
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-019-1279-y
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