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Epidermolysis Bullosa

National Organization for Rare Disorders, Inc.


It is possible that the main title of the report Epidermolysis Bullosa 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.


  • EB

Disorder Subdivisions

  • epidermolysis bullosa simplex
  • junctional epidermolysis bullosa
  • dystrophic epidermolysis bullosa
  • Kindler syndrome

General Discussion

Epidermolysis bullosa (EB) is a genetic skin disorder characterized clinically by blister formation from mechanical trauma. There are four 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

3rd Floor

New York, NY 10017

Tel: (212)868-1573

Fax: (212)868-9296

Tel: (866)332-7276



Oley Foundation

214 Hun Memorial MC-28

Albany Medical Center

Albany, NY 12208-3478


Tel: (518)262-5079

Fax: (518)262-5528

Tel: (800)776-6539



Coalition for Heritable Disorders of Connective Tissue (CHDCT)

4301 Connecticut Avenue, NW Suite 404

Washington, DC 20008

Tel: (202)362-9599

Fax: (202)966-8553

Tel: (800)778-7171




13 Wellington Business Park

Dukes Ride


Berkshire, RG45 6LS

United Kingdom

Tel: 441344771961

Fax: 441344762661



EB Medical Research Foundation

2757 Anchor Ave

Los Angeles, CA 90064

Tel: (310)854-0957



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


Epidermolysis Bullosa Action Network

16613 Milan De Avila

Tampa, FL 33613

Tel: (813)325-1955



Australasian Blistering Diseases Foundation

St. George Hospital,

Department of Dermatology

Gray Street


Sydney, NSW 2217


Tel: 0291132088

Fax: 0291132886



For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to and click on Rare Disease Database under "Rare Disease Information".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site or email

Last Updated:  6/27/2013

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