Children with Epidermoysis Bullosa are also called butterfly children, as their skin is as fragile as butterfly wings.

Epidermolysis Bullosa (EB) is the name of an incurable, inherited skin disease. People born with EB lack anchors that hold the layers of their skin together. As a consequence, any activity that rubs or causes pressure produces a painful sore, akin to a second-degree burn, usually externally at first and later, internally. This rare genetic defect is incurable at the moment and is always fatal, sooner or later. Investing in research is unattractive for the pharmaceutical industry because there are so few patients who suffer from this disease.

To find out more about EB, such as treatments, research programmes and current research, go to:
www.debra-international.org