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

  • None

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)
75 Broad Street
Suite 300
New York, NY 10004
Tel: (212)868-1573
Fax: (212)868-9296
Tel: (866)332-7276
Email: staff@debra.org
Internet: http://www.debra.org

Turner Syndrome Society of the United States
11250 West Road, Suite G
Houston, TX 77065
Tel: (832)912-6006
Fax: (832)912-6446
Tel: (800)365-9944
Email: tssus@turnersyndrome.org
Internet: http://www.turnersyndrome.org

Turner Syndrome Support Group of New England (Deleted)
170 Maple Street
Malden, MA 02148
Tel: (617)322-4892

Oley Foundation
43 New Scotland Ave., MC-28
Albany Medical Center
Albany, NY 12208-3478
Tel: (518)262-5079
Fax: (518)262-5528
Tel: (800)776-6539
Email: dahlr@mail.amc.edu
Internet: http://www.oley.org

Turner's Syndrome Society of Canada
30 Cleary Avenue
Ontario, K2A 4A1
Tel: 6133212267
Fax: 6133212268
Tel: 8004656744
Email: info@turnersyndrome.ca
Internet: http://www.turnersyndrome.ca/index.html

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
Email: chdct@pxe.org
Internet: http://www.chdct2.org/

13 Wellington Business Park
Dukes Ride
Berkshire, RG45 6LS
United Kingdom
Tel: 441344771961
Fax: 441344762661
Email: debra@debra.org.uk
Internet: http://www.debra.org.uk

EB Medical Research Foundation
2757 Anchor Ave
Los Angeles, CA 90064
Tel: (310)854-0957
Email: a.pett@bep-la.com
Internet: http://www.ebkids.org

Turner Syndrome Support Society (UK)
13 Simpson Court
11 South Ave
Clydebank Business Park
Clydebank, G81 2NR
Tel: 0141 952 8006
Fax: 0141 952 8025
Tel: 0845 2307520
Email: Turner.Syndrome@tss.org.uk
Internet: http://www.tss.org.uk

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
Internet: http://rarediseases.info.nih.gov/GARD/

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

Australasian Blistering Diseases Foundation
St. George Hospital,
Department of Dermatology
Gray Street
Sydney, NSW 2217
Tel: 0291132088
Fax: 0291132886
Email: info@blisters.org.au
Internet: http://www.blisters.org.au/BDHome.html

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 www.rarediseases.org 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 www.rarediseases.org or email orphan@rarediseases.org

Last Updated:  6/27/2013
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