National Organization for Rare Disorders, Inc.
It is possible that the main title of the report Epidermolysis Bullosia is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.
- epidermolysis bullosa simplex
- junctional epidermolysis bullosa
- dystrophic epidermolysis bullosa
Epidermolysis bullosa (EB) is a genetic skin disorder characterized clinically by blister formation from mechanical trauma. There are three main types with additional sub-types identified. There is a spectrum of severity, and within each type, one may be either mildly or severely affected. EB ranges from being a minor inconvenience requiring modification of some activities, to being completely disabling and, in some cases, fatal.
Friction causes blister formation. Blisters can form anywhere on the surface of the skin, within the oral cavity and in more severe forms may also involve the external surface of the eye, as well as the respiratory, gastrointestinal and genitourinary tracts. In some forms of the disease, disfiguring scars and disabling musculoskeletal deformities occur.
Currently, there is no cure for EB. Supportive care includes daily wound care, bandaging, and pain management as needed
Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (DEBRA)
16 East 41st Street
New York, NY 10017
13 Wellington Business Park
Berkshire, RG45 6LS
Tel: +44 1344 771961
Fax: 44 1344 762661
EB Medical Research Foundation
8909 W. Olympic Blvd. #222
Beverly Hills, CA 90211
MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
PO Box 241956
Los Angeles, CA 90024
Epidermolysis Bullosa Action Network (EBAN, Inc.)
16613 Milan De Avila
Tampa, FL 33613
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This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html