W H A T  I S  E B? 
Epidermolysis Bullosa (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 and 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. There is no cure for EB but there are treatments that help alleviate some of the debilitating symptoms of certain types of EB.  As of 2025, three therapies have been approved by the U.S. Food & Drug Administration marking a historic shift in the landscape of care and a powerful step forward for individuals and families affected by this devastating disease.  To learn more please visit here.

W H A T  I S  D E B R A  O F  A M E R I C A?
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. Each year, debra of America spends an average of $1.5 million on direct-to-patient programs and services to provide immediate relief to thousands of families across the country.