Epidermolysis Bullosa (EB) attacks the body’s largest organ — skin — and not just the skin we see but also the connective tissue and organs inside of us. It results in wounds that never heal, disfigurement, blisters, bleeding, and ever-present pain. It is lethal for many. If that sounds awful, imagine how it feels to the children born with it.

One in 227 people carries the defective gene that causes EB. Fortunately, most never express the disease. For those that do, EB means skin can peel away at the softest touch. With skin as fragile as the wings of a butterfly, everyday pleasures like eating, sleeping, walking & playing — can bring fear and pain.

We have a plan to defeat EB. It’s a plan that not only promises to change the lives of families fighting this disease but also to change the way rare disease treatments are found.

Through tireless research, scientists have identified the mutation that leads to EB. They believe they know how to fix the problem. And they believe that this fix is applicable to many genetic diseases. But because most people have never heard of EB, a lack of funding holds back an end to this devastating condition.

The biggest obstacle to curing EB isn’t science — it’s funding.