National Organization for Rare Disorders, Inc.

Epidermolysis Bullosa

Important
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.

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: scohen@debra.org
Internet: http://www.debra.org

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

EB Medical Research Foundation
130 Sandringham Rd., Piedmont, CA 94611 or
8909 W. Olympic Blvd.,Ste. 222, Beverly Hills, CA 90211
Tel: 510-530-9600/310-854-0957
Fax: 510-530-6100
Email: ebmrf@comcast.net
Internet: http://www.ebkids.org

MUMS (Mothers United for Moral Support, Inc) 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/

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

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

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:  4/28/2009
Copyright  1984, 1985, 1986, 1987, 1988, 1989, 1990, 1991, 1992, 1993, 1994, 1995, 1996, 1997, 1999, 2002, 2005, 2006, 2007, 2008, 2009 National Organization for Rare Disorders, Inc.

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