Organisation

debra of America (The Dystrophic Epidermolysis Bullosa Research Association of America)
City :
New York
Phone :
+0012128681573
Contact
Event organised
United States

debra of America (The Dystrophic Epidermolysis Bullosa Research Association of America) City: New York Phone : +0012128681573

The Dystrophic Epidermolysis Bullosa Research Association of America (debra of America), is the only national nonprofit dedicated to funding research and providing free services and programs for those with Epidermolysis Bullosa (EB) — "The Worst Disease You've Never Heard Of." debra of America 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 rare genetic connective tissue disorder. 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. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, is often pervasive and debilitating, and is in some cases lethal before the age of 30. There is no treatment or cure. Daily wound care, pain management, and protective bandaging are the only options available. Visit: www.debra.org


http://www.debra.org/rare-disease-day
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