Dystrophic Epidermolysis Bullosa Research Association of America (debra of America)
Dystrophic Epidermolysis Bullosa Research Association of America (debra of America)
Boulder CO | IRS ruling year: 1982 | EIN: 11-2519726
Organization Mission
The Dystrophic Epidermolysis Bullosa Research Association of America (debra of America), is the only national non-profit that provides all-inclusive care to those with Epidermolysis Bullosa (EB).
Our mission is to improve the lives of those impacted by Epidermolysis Bullosa (EB) - "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.
EB is a group of rare disorders caused by a mutation in one of 18 genes. People with EB share the lifelong challenge of extremely fragile skin that blisters or tears from minor friction or trauma. The list of medical complications EB causes may be long and often requires multiple interventions from a range of medical specialists.