Epidermolysis bullosa (EB) is a group of genetic conditions that affects roughly one in every 50,000 children. Children with EB have abnormally fragile skin: mild trauma or friction that would not affect other children can cause blisters and debilitating scarring.
Managing the disease affects every aspect of family life. Children with EB face complications such as poor nutrition, anemia, high risk of infection, early skin cancer, joint problems and the disfiguring effects of the disease. They often need surgical procedures requiring special expertise.
There is no cure for EB, but our center is in close contact with several research groups around the world that are working on innovative treatments. Additionally, resources such as the Dystrophic Epidermolysis Bullosa Research Association of America (DebRA) provide a network of support for children with EB and their families.