UNDERSTANDING EB ABOUT PROGRAMS & SERVICES FAMILY CENTER TAKE ACTION EVENTS DONATE Home • About debra of America 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. 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, 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. ABOUT LEARN MORE STAY UPDATED 75 Broad Street, Suite 300 New York, NY 10004 About debra of America Contact Us Privacy Policy What is EB Take Action Programs & Services New Families Events © Copyright 2016, Debra of America (Dystrophic Epidermolysis Bullosa Research Association of America), All Rights Reserved | Debra of America is a registered 501(c)(3) tax exempt organization. | All Trademarks and Brands are Property of Their Respective Owners. Debra does not endorse any drugs, tests, or treatments that we may report. This website is for informational purposes, always check with your physician before adopting any medical treatment. | CFC#: 11990