Dystrophic Epidermolysis Bullosa Research Assn Of America Inc
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- EIN 11-2519726
- 75 Broad St Rm 300 New York NY 10004-3243 USA
- http://www.debra.org
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Nonprofit Overview
Causes: Birth Defects & Genetic Diseases, Health, Pediatrics, Specifically Named Diseases Research
Mission: DebRA of America is the only national oganization that raises funds for research for a cure for EB and provides services and programs for people with EB and their families. EB is a debilitating, genetic skin disease in which painful blisters form due to minor friction inside and outside of the body. Blisters interfere with the simplest acts of daily living such as eating, walking, bathing, etc. These blisters can develop into serious wounds. There is no cure for EB, just trteatment of wounds through daily bandaging to prevent further damage and infections. Types of EB range from mild to severe, and EB can be fatal in some cases. Skin cancer can occur among people with one type of EB.
Programs: DebRA acts as a clearing house for information related to EB research and treatment protocols. A nurse educator responds to the daily care questions from parents,requests for referrals to specialists,and speaks to physicians and health care providers unfamilar with EB.A Family Crisis Fund provides financial assistance to those families who cannot afford the staggering costs of wound care products not reimbursable under some health insurance plans. A biennial patient conference, mailings, and web-site help to educate families and patients about day-to-day issues in managing EB. The New Family Advocate Program provides families with a newly diagnosed baby with a trained volunteer to make phone contact and in-person visits to help the family cope with getting acclimated to caring for a child with EB.