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Dystrophic Epidermolysis Bullosa Research Association of America, Inc .
The mission of DebRA of America is to find a cure for Epidermolysis Bullosa (EB) and to improve the health and well being of all individuals and families in the world affected by all forms of the disorder.
Debra of America is the only national non-profit organization dedicated to funding research for treatment and a cure and providing direct services for those with Epidermolysis Bullosa (EB). EB is a rare genetic disease that causes the skin to be so fragile that the slightest friction can cause severe blistering--inside and outside the body. Children born with EB are often referred to as "butterfly children" because their skin is as fragile as butterfly's wings. Today there is no cure and the only treatment for butterfly children is wound care, bandaging and pain management. Caring for open wounds through bandaging and avoiding infection is a painful, daily struggle for those living with EB.
- Meghan Jay
- (212) 868-1573
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