What is Epidermolysis Bullosa?
Epidermolysis Bullosa is a life threatening rare genetic disorder that affects the skin. With the skin being the body's largest organ, it is a very important form of protection. Individuals with this disease lack the proteins that band skin layers together, resulting in the skin tearing apart and blistering which leads to severe pain. Today, there is no treatment for EB and researchers are actively working to change that!
Our Non-Profit: debra
"Because the cost of doing nothing is too great" is a phrase that encompasses debra's mission. debra is dedicated to improving the quality of life of those living with Epidermolysis Bullosa by providing free programs and services.
Mission
debra's mission is to provide free programs and services to the EB community in the United States. debra also funds research directed at symptom relief and systemic cure. In 2021, $2.5 million dollars were spent on direct-to-patient programs and services and 25 ongoing research projects were funded.
Vision
debra was originally founded to fill the large gaps of knowledge about the cause, diagnosis, treatment, and cure for Epidermolysis Bullosa. Since 1980, debra has been committed to their mission to find a cure while responding to the immediate need of providing services to patients with EB and their families.
