Aigerim Saparova-Smith's Contact Details

Aigerim Saparova-Smith's Company Details

Debra of America

New York, NY, US • 20 - 49 Employees
Non-Profit

‪‎Epidermolysis Bullosa (EB) — "The Worst Disease You've Never Heard Of."​ DEBRA OF AMERICA'S MISSIONThe Dystrophic Epidermolysis Bullosa Research Association of America (debra of America), founded in 1980, 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 EB. WHAT IS EB?EB is a rare genetic connective tissue disorder in which individuals do not produce a vital protein that allows their skin to adhere to itself. It is present in 1 out of every 20,000 live births in the U.S. EB afflicts both genders and all racial and ethnic backgrounds equally. The most prominent manifestation of EB is blistering or tearing of the skin from the slightest touch or friction, which causes patients to live with constant pain and scarring. Because their skin is so fragile, they are often known as "Butterfly Children."​ Taking off a shirt or even receiving a hug is incredibly painful and causes the skin to peel away. Internal organs and bodily systems can also be seriously affected by EB, and the worst forms lead to eventual disfigurement, disability, and often early death. Treatment is supportive and includes daily wound care, bandaging, and pain management. While there is currently no cure for EB, scientists around the world are dedicating their energies to developing life-changing treatments, in addition to finding a cure.GET ENGAGED. GET INVOLVED. RAISE EB AWARENESS!Your support improves the quality of life for thousands living with EB; it helps us provide free bandages, through one of our many programs, and allows us to fund groundbreaking research – research that is already pointing towards a cure! Get involved, email: events@debra.orgMORE INFORMATIONdebra.org debra.org/blog facebook.com/debraofamerica