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a/k/a: DebRA UK
13 Wellington Business Park
Berkshire, RG45 6LS
The DebRA is a nonprofit voluntary organization in the UK dedicated to offering information, assistance, and support to people whose lives are affected by epidermolysis bullosa (EB). EB is a group of genetic disorders in which there is a defect causing the skin layers to separate and blister either spontaneously or at the slightest friction. Symptoms usually are apparent at, or shortly after, birth. Established in 1978 by a group of parents with children affected by EB, DebRA is committed to funding international research into the causes of and possible cures for EB; providing specialist nursing and paramedical staff to support families and professionals; and publishing an extensive range of informational materials for the medical community and the general public. DebRA is also committed to providing specialist equipment or financial support in cases of special need; organizing, where appropriate, holidays for individuals with EB and their families; coordinating and assisting in the development of EB support groups worldwide; and encouraging the development of local treatment in the regions throughout the United Kingdom. DebRA provides referrals including to genetic counseling, engages in patient advocacy and lobbying, offers networking services, and engages in-patient and professional education. The organization offers a wide range of educational materials including fact sheets, brochures, pamphlets, booklets on all aspects of EB for professionals and affected families, bibliographies of medical journal articles published on EB, and videos.
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