Epidermolysis bullosa care in Scandinavia

Abstract

The recessive forms of epidermolysis bullosa (EB) are common in Scandinavia, especially in the northern parts of Norway and Sweden. The daily care of EB in Scandinavia is organized around the patient via settings at the local hospital or health service. However, the diagnosis of EB and providing correct patient/family information usually require a specialized service. Specialized EB care in Scandinavia is mainly provided by dermatologists, pediatricians, and dentists working together in a team. The increasing number of EB families with foreign ethnic backgrounds and language problems is a challenge to the health service, especially in Sweden, and demands increased facilities. Also, the high expectations by parents of children with junctional EB and recessive dystrophic EB about new, revolutionizing therapies are challenges that can only be met by international collaboration and more research in specialized centers for EB. A close collaboration with patient organizations and various charity organizations will be very helpful in this respect.