Diseases & Conditions


A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

Epidermolysis Bullosa


Synonyms of Epidermolysis Bullosa
  • EB

Disorder Subdivisions

  • dystrophic epidermolysis bullosa
  • epidermolysis bullosa simplex
  • junctional epidermolysis bullosa


General Discussion
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

Organizations related to Epidermolysis Bullosa
  • DebRA-United Kingdom
    DEBRA House
    Berkshire None RG45 6LS
    Phone #: +44- 13-44 771961
    800 #: --
    e-mail: admin@debra.org.uk
    Home page: http://www.debra.org.uk
  • Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (DEBRA)
    16 East 41st Street
    New York NY 10017
    Phone #: 212-868-1573
    800 #: 866-332-7276
    e-mail: staff@debra.org
    Home page: http://www.debra.org
  • EB Medical Research Foundation
    130 Sandringham Rd., Piedmont, CA 94611 or
    None None None
    Phone #: 510--53-0-9600/310-854-0957
    800 #: --
    e-mail: ebmrf@comcast.net
    Home page: http://www.ebkids.org
  • Epidermolysis Bullosa Action Network (EBAN, Inc.)
    16613 Milan De Avila
    Tampa FL 33613
    Phone #: 813-325-1955
    800 #: N/A
    e-mail: silvia@ebanusa.org
    Home page: http://www.ebanusa.org
  • MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
    150 Custer Court
    Green Bay WI 54301-1243
    Phone #: 920-336-5333
    800 #: 877-336-5333
    e-mail: mums@netnet.net
    Home page: http://www.netnet.net/mums/
  • Madisons Foundation
    PO Box 241956
    Los Angeles CA 90024
    Phone #: 310-264-0826
    800 #: N/A
    e-mail: getinfo@madisonsfoundation.org
    Home page: http://www.madisonsfoundation.org



For a Complete Report

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