Consensus-based guidelines for the provision of palliative and end-of-life care for people living with epidermolysis bullosa

BACKGROUND: Inherited epidermolysis bullosa (EB) is a cluster of rare, genetic skin and mucosal fragility disorders with multi-system and secondary effects, in which blistering and erosions occur in response to friction/mechanical trauma. Considering the incurable and potentially life-limiting natur...

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Detalles Bibliográficos
Autores principales: Popenhagen, Mark P., Genovese, Paola, Blishen, Mo, Rajapakse, Dilini, Diem, Anja, King, Alex, Chan, Jennifer, Pellicer Arasa, Eduard, Baird, Simone, Ferreira da Rocha, Anna Carolina, Stitt, Gideon, Badger, Kellie, Zmazek, Vlasta, Ambreen, Faiza, Mackenzie, Caroline, Price, Harper, Roberts, Toni, Moore, Zena, Patton, Declan, Murphy, Paul, Mayre-Chilton, Kattya
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Review
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10476410/
https://www.ncbi.nlm.nih.gov/pubmed/37667330
http://dx.doi.org/10.1186/s13023-023-02870-8

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