What is EB? 

Epidermolysis Bullosa, or EB, is a rare connective tissue disorder with many genetic and symptomatic variations.  All types of EB share the major symptom of extremely fragile skin that blisters and tears from the slightest friction or trauma.  Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30.  There is currently no cure or treatment for EB. Pain management, wound care, and preventative bandaging are the only options available. 

There are about 25,000 people living with EB in the US.  It occurs in every racial and ethnic group and affects both genders equally. For a more in-depth and comprehensive understanding of EB, please also check out debra of America’s explanation by clicking here.

What is debra of America? 

“Because the cost of doing nothing is too great” is an axiom that defines our mission and directs all of debra of America’s actions as an organization. We are dedicated to improving the quality of life for those living with EB. To achieve this, we do two things in parallel: we develop and execute programs and free services for the EB Community in the U.S., and fund the most innovative research directed at symptom relief and a systemic cure.

In 2018 alone, debra of America spent $3 million on our direct-to-patient programs + services and research, a 30.4% increase from the year before.