About DebRA

Debra Patient Care Conference 2010The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA), is the only national non-profit dedicated to funding research and providing services and programs for those with
Epidermolysis Bullosa (EB) — The Worst Disease You've Never Heard Of.™

DebRA is dedicated to finding a cure for EB, which affects 1 out of every 20,000 live births in the United States. EB is a genetically based disease characterized by chronic, painful blistering. The skin and mucous membranes are so fragile that the slightest touch can cause severe blistering inside and outside the body.

Present at birth, EB affects men and women of all races and ethnic groups and sometimes, when there is no family history, it occurs as the result of a spontaneous genetic mutation. Today, there is no cure or treatment for EB, except daily wound care and bandaging. Genetic research is making progress towards treatments and a cure.

Click here to contact DebRA of America’s headquarters in New York City.

MISSION STATEMENT

The mission of DebRA of America is to improve the quality of life for all people living with EB, their families, and caregivers through programs and services while funding research to find a cure and treatments for Epidermolysis Bullosa.

HISTORY

DebRA of America was founded in 1980 by Arlene Pessar and her son, Eric Lopez who was born with Epidermolysis Bullosa (EB). Eric testified before Congress six times during the 1980's urging Federal appropriations for research as well as legislation that created five clinical centers and a national registry of patients. On October 11, 1984, President Ronald Reagan and the 98th Congress of the United States of America signed the Joint Resolution approving the first-ever “National Epidermolysis Bullosa Awareness Week.” Eric passed away on October 8, 1994, at 24, after years of spreading awareness. Frustrated with the lack of available medical information on the disease when Eric was born, Arlene wrote countless letters to nursing journals seeking information about EB. The young organization sought to fill the large gaps in knowledge about the cause, diagnosis, treatment and a cure for the disease. After writing the first informational materials on EB, DebRA of America identified regional representatives to promote awareness and disseminate this information. Initial television, radio and newspaper publicity drew attention to the rare disease. In the inaugural year, the first DebRA newsletter was published and mailed to 100 EB families across the country. Today, the DebRA of America E-Newsletter is emailed to over 10,000 families, health professionals, corporations, public officials, and supportive donors. Click here to create an account and sign-up for the E-Newsletter.

Throughout its 30 years, DebRA has remained committed to funding research toward a cure, while responding to the increased need to provide direct services to patients and their families.


THE DebRA TEAM

The DebRA team consists of a dedicated Staff, Board of Trustees and Scientific Advisory Board.

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