The Dystrophic Epidermolysis Bullosa Research Association of America, Inc.
Leading national nonprofit improving the lives of those impacted by Epidermolysis Bullosa (EB) —"The Worst Disease You've Never Heard Of." debra of America is the leading national nonprofit improving the lives of those impacted by Epidermolysis Bullosa (EB) —"The Worst Disease You've Never Heard Of." Mission 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. 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 or 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.
The Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (commonly known as debra of America) is a United States-based nonprofit organization dedicated to improving the lives of individuals affected by Epidermolysis Bullosa (EB), a rare genetic skin disorder characterized by fragile skin that blisters and tears from minor friction or trauma.
History
debra of America was founded in 1980 by Arlene Pessar and her son, Eric Lopez, who was born with EB. Motivated by the lack of medical information and support for EB patients, Arlene and Eric began by writing informational materials and seeking out nursing journals to raise awareness of the disease. Eric Lopez testified before the United States Congress six times in the 1980s, advocating for federal appropriations for EB research and legislation. These efforts contributed to the establishment of five clinical centers specializing in EB and the creation of a national patient registry.
Their advocacy garnered national attention, culminating in President Ronald Reagan and the 98th United States Congress officially designating the first-ever "National Epidermolysis Bullosa Awareness Week" on October 11, 1984. Since its inception, debra of America has remained committed to funding research towards a cure and providing direct services to patients and families affected by EB.
Mission and Activities
The mission of debra of America is to improve the quality of life of all people living with EB in the United States, including their families and caregivers. The organization operates as the only U.S. nonprofit providing comprehensive, all-inclusive support to the EB community through two primary avenues:
- Funding research aimed at discovering treatments and ultimately a cure for EB.
- Providing free programs and services that address the medical, social, and emotional needs of those impacted by EB.
debra of America’s initiatives include educational outreach, patient support services, advocacy efforts, and public awareness campaigns. Notably, in 2015, the organization launched the #ItWontHurtToWatch campaign, which utilized TV and web commercials to heighten public understanding of EB and its challenges.
Partnerships and Global Context
debra of America is part of a broader international network of DEBRA organizations dedicated to EB advocacy. Collectively, these organizations work toward a shared vision where all individuals with EB have access to specialist treatments, healthcare, and social support regardless of geographic location. debra of America collaborates with researchers, healthcare providers, and industry partners to advance EB research and improve patient care nationwide.
This summary reflects the organization's history, mission, and impact in supporting the EB community in the United States.[1][2][3][4][5]
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