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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...
Autores principales: | Bruckner, Anna L., Losow, Michael, Wisk, Jayson, Patel, Nita, Reha, Allen, Lagast, Hjalmar, Gault, Jamie, Gershkowitz, Jayne, Kopelan, Brett, Hund, Michael, Murrell, Dedee F. |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6942340/ https://www.ncbi.nlm.nih.gov/pubmed/31900176 http://dx.doi.org/10.1186/s13023-019-1279-y |
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