The Worst Disease You've Never Heard Of.
Imagine a life where up to 75% of your body is covered in open wounds, the cost of necessary medical supplies skyrocket to over $80,000 per month, and your insurance does not pay.
This is the reality for people with Epidermolysis Bullosa (EB, for short), a group of rare diseases caused by a mutation in one of 18 genes. People with EB share the lifelong challenge of extremely fragile skin that blisters and tears from minor friction or trauma.
About debra of America
We are dedicated to improving the lives of those impacted by EB, or what we call “The Worst Disease You’ve Never Heard Of.” We integrate direct-to-patient programs and services, education, advocacy, close partnership with treatment developers, and research funding to foster meaningful change for those living with EB.
