We are committed to advancing treatments and finding a cure so that children with EB can grow up to live full, pain-free lives.
What is EB?
An individual with EB lacks a critical protein that binds the layers of skin together. Without this protein, the skin tears apart, blisters and sheers off, leading to severe pain, disfigurement, and wounds that never heal. EB affects the body inside and out. Blisters occur all over the body, as well as in the eyes, mouth, esophagus, and other internal organs. EB causes severe pain, disfigurement, and in too many cases, an early death from an aggressive form of skin cancer. It is estimated that EB affects at least one in every 20,000 births. EB is not specific to any ethnicity or gender. Given that EB affects only 30,000 people in the US, advancing this research relies on the generosity of individuals and corporations.