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.
Every year, 200 children are born with EB in the United States, in addition to the approximately 25,000 people already living with EB. While it's considered a rare disorder, it's the immense burden of EB that drives the need for a high level of patient support, and why we call EB "The Worst Disease You've Never Heard Of."
People with EB live with constant excruciating physical pain, which is a huge factor in the emotional distress this disease causes. Coping with EB also inflicts tremendous financial challenges on the individuals and families affected.
debra of America's 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.
We envision a future where the burdens of EB are eased and eradicated, empowering those affected to lead lives free from the challenges of EB.
debra of America was founded in 1980 by Arlene Pessar and her son, Eric Lopez, who was born with EB. Eric testified before Congress six times during the 1980s urging federal appropriations for research and legislation, which led to the creation of five clinical centers and a national registry of patients.
Frustrated with the lack of available medical information on the disease, Arlene and Eric wrote countless letters to nursing journals seeking information about EB. debra of America was founded to fill the significant gaps in knowledge about the cause, diagnosis, treatment, and cure for the rare disease. After writing the first informational materials on EB, Arlene and Eric identified regional representatives to promote awareness and disseminate this information. Initial television, radio, and newspaper publicity drew attention to debra of America’s mission and in the organization’s inaugural year, the first newsletter was mailed to 100 EB families nationwide.
The family's valiant efforts caught the attention of President Ronald Reagan. On October 11, 1984, President Reagan and the 98th Congress of the United States of America signed the Joint Resolution approving the first-ever “National Epidermolysis Bullosa Awareness Week.”
Since 1980, debra of America has remained committed to its mission to fund research toward a cure, while responding to the increased need to provide direct services to patients and their families.