Epidermolysis Bullosia

National Organization for Rare Disorders, Inc.

Important
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.

Synonyms

  • EB

Disorder Subdivisions

  • epidermolysis bullosa simplex
  • junctional epidermolysis bullosa
  • dystrophic 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

Resources

Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (DEBRA)
16 East 41st Street
Third Floor
New York, NY 10017
Tel: (212)868-1573
Fax: (212)868-9296
Tel: (866)332-7276
Email: staff@debra.org
Internet: http://www.debra.org

DebRA
13 Wellington Business Park
Dukes Ride
Crowthorne
Berkshire, RG45 6LS
United Kingdom
Tel: +44 1344 771961
Fax: 44 1344 762661
Email: debra@debra.org.uk
Internet: http://www.debra.org.uk

EB Medical Research Foundation
8909 W. Olympic Blvd. #222
Beverly Hills, CA 90211
Tel: (310)854-0957
Email: a.pett@bep-la.com
Internet: http://www.ebkids.org

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: getinfo@madisonsfoundation.org
Internet: http://www.madisonsfoundation.org

Epidermolysis Bullosa Action Network (EBAN, Inc.)
16613 Milan De Avila
Tampa, FL 33613
Tel: (813)325-1955
Email: silvia@ebanusa.org
Internet: http://www.ebanusa.org

For a Complete Report

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

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