About debra of America

The Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) is the only U.S. nonprofit providing all-inclusive support to the EB Community, through funding research for a cure and by providing free programs and services for those with:
Epidermolysis Bullosa (EB) — "The Worst Disease You've Never Heard Of."

EB is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Learn more about EB.

MISSION STATEMENT

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

EB Families

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.

debra of America filled the large gaps in knowledge about the cause, diagnosis, treatment, and a cure for the rare disease. After writing the first informational materials on EB, they identified regional representatives to promote awareness and disseminate this information. Initial television, radio, and newspaper publicity drew attention to their mission. In the inaugural year, the first newsletter was mailed to 100 EB families across the country. Today, debra of America's E-Newsletter is emailed to thousands of patients, families, health professionals, corporations, public officials, and supportive donors. Sign-up for the E-Newsletter.

Throughout its 35 years, debra of America has remained committed to funding research toward a cure, while responding to the increased need to provide direct services to patients and their families.

Arlene Pessar and Eric Lopez: Family Circle Magazine
[Arlene Pessar, founder of debra of America, and her son Eric Lopez in the January 12, 1982 issue of Family Circle Magazine]

INTERNATIONAL

DEBRA International is a worldwide network supporting EB. Click here for the complete list of countries.

THE DEBRA OF AMERICA TEAM

The debra of America team consists of a dedicated Staff, Board of Directors, and Scientific Advisory Board.