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Living with epidermolysis bullosa: Daily challenges and health‐care needs | Synapse

December 23, 2019Open Access

Living with epidermolysis bullosa: Daily challenges and health‐care needs

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Resumen

BACKGROUND access to community/home-based services; EB-specific information and psychosocial support; effective interaction with health-care professionals; and advice regarding benefits and entitlements. DISCUSSION AND CONCLUSIONS: This article represents the health-care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition.

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Cite This Study

Kearney et al. (Mon,) studied this question.

synapsesocial.com/papers/6a052abbccdd74096c34504e https://doi.org/https://doi.org/10.1111/hex.13006

Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

1A consensus approach to wound care in epidermolysis bullosa2012 · 223 citations
2Interdisciplinary Management of Epidermolysis Bullosa in the Public Setting: The Netherlands as a Model of Care2010 · 15 citations
3Continuity of care for children with complex chronic health conditions: parents' perspectives2009 · 198 citations
4Inherited epidermolysis bullosa: Updated recommendations on diagnosis and classification2014 · 935 citations
5Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare System2018 · 234 citations