Epidermolysis bullosa (EB) is a rare group of genetically inherited skin fragility disorders (Denyer and Pillay, 2012). There are four major types of EB: simplex, junctional EB, dystrophic EB and Kindler (Fine et al, 2014). At present there is no cure for EB and patients suffer from lifelong wounding. Much of the clinical care is focused around symptom management: wound care, pain control, preserving function and palliative care. With this article, the author, an EB Clinical Nurse Specialist (CNS) working in a Tertiary Care Centre, gives an overview of the key issues and treatment regimens, while explaining the need for specialist care to help reduce the complications of living with this complex condition.