These guidelines have been developed to aid clinicians in the management of skin and wound care for patients with the genetic skin fragility disorder epidermolysis bullosa (EB).
Management strategies for wounds or wound complications are suggested for patients of any age diagnosed with any form of this genetically inherited disorder.
This document was developed using a survey of clinicians from different countries who work with EB and who were prepared to share their knowledge of EB wounds and their management. A systematic literature search (described below) was undertaken to provide further evidence for recommendations. However, as EB is a rare condition with small patient numbers, the literature is predominantly made up of non-analytic studies or expert opinion (Level 3–4 or D, see right hand column).
The information was supplemented with dayto-day experience of people living with EB and their carers’ testimonials. This was gathered informally at home visits and clinic attendances, within the day-to-day work of the EB nursing teams.