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DonateWith help from supporters like you, Debra of America continues to provide programs and services to people with Epidermolysis Bullosa and their families, and to support EB research.Thank You. |
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The mounting cost of bandages is most often not covered by an EB family's health insurance. |  |
89.4¢ of every dollar donated goes directly to EB patients, families, and research. |
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debra of America offers the first ever EBCare Patient Reported Registry — a resource for individuals and families affected by all forms of Epidermolysis Bullosa (EB) and qualified researchers. The confidential information collected is used to promote research, support policy initiatives and increase awareness. |
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Thank you to our generous 2014 sponsors, attendees, co-chairs, committee members, volunteers, and silent auction donors for continuing to help debra of America fund research and provide free supportive programs and services for those with Epidermolysis Bullosa. THANK YOU TO OUR 2014 BENEFIT SPONSORS!
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Epidermolysis Bullosa (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. EB affects 1 out of every 20,000 live births and those born with it are often called ‘Butterfly Children’ because as the analogy goes, their skin is as fragile as the wings of a butterfly. There is no treatment or cure. Daily wound care, pain management and protective bandaging are the only options available. Click to learn more.
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