Rare Disease - Epidermolysis Bullosa

Recessive Dystrophic Epidermolysis Bullosa is a rare genetic skin disease that affects infants and children and causes the skin to blister or even tear from rubbing, friction, scratching or even changing a diaper. Most often, blisters are present over the whole body and can affect mucous membranes such as the moist lining of the mouth and digestive tract. Many children suffer such intense scarring that their hands become “mitt”-like and are of limited functionality over time.

The average life expectancy for children with the disease is less than 30 years of age. Approximately 200 babies are born each year with this disease. These children require care 24/7 for their entire lives at an enormous cost. There are no effective treatments available today.