Epidermolysis bullosa (EB) is a rare genetic skin fragility disorder and the majority of patients live with life-long wounding. EB is not specific to any racial group and those affected by the disorder can be found all over the world. In contrast with many other countries, the UK is fortunate to have well-developed specialist services with experienced multidisciplinary teams who serve this patient group. Sharing of experience and expertise is particularly crucial in caring for those with rare conditions and this recognition led to the development of guidelines to be shared globally. In 2012 and, more recently, in 2016, London EB centres led on the development of best practice guidelines for skin and wound care in EB, with participation from EB professionals worldwide, patients and carers. This article outlines the process of developing the guidelines and the challenges of finding evidence to support management strategies in a complex rare condition.
