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

Simplex Epidermolysis Bullosa
Non-Scarring Epidermolysis Bullosa
Scarring Bullosa
Acantholysis Bullosa
Acanthosis Bullosa
Bullosa Hereditaria
Dowling-Meara Syndrome
EB
Epidermolysis Bullosa Acquisita
Epidermolysis Bullosa Hereditaria
Epidermolysis Bullosa Letalias
Epidermolysis Hereditaria Tarda
Goldscheider's Disease
Hallopeau-Siemens Disease
Heinrichsbauer Syndrome
Herlitz Syndrome
Hyperplastic Epidermolysis Bullosa
Keratolysis
Kobner's Disease
Localized Epidermolysis Bullosa
Polydysplastic Epidermolysis Bullosa
Weber-Cockayne Disease

Disorder Subdivisions

Epidermolysis Bullosa Simplex
Junctional Epidermolysis Bullosa
Dystrophic Epidermolysis Bullosa

General Discussion

Epidermolysis bullosa (EB) refers to a group of rare, inherited skin diseases characterized by recurring painful blisters and open sores, often in response to minor trauma, as a result of the unusually fragile nature of the skin. Some severe forms may involve the eyes, tongue, and esophagus, and some may produce scarring and disabling musculoskeletal deformities. There are three major forms: epidermolysis bullosa simplex (EB simplex), the most common; dystrophic epidermolysis bullosa (DEB), and junctional epidermolysis bullosa (JEB).

Resources

WE MOVE (Worldwide Education and Awareness for Movement Disorders)
204 West 84th Street
New York, NY 10024
USA
Tel: 2128758312
Fax: 2128758389
Email: wemove@wemove.org
Internet: http://www.wemove.org

Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (DEBRA)
5 West 36th St
Suite 404
New York, NY 10018
Tel: (212)868-1573
Fax: (212)868-9296
Tel: (866)332-7276
Email: scohen@debra.org
Internet: http://www.debra.org

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)428-7100
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

National Cancer Institute
6116 Executive Blvd, MSC 8322, Room 3036A
Bethesda, MD 20892-8322
USA
Tel: 3014353848
Tel: 8004226237
TDD: 8003328615
Internet: http://www.cancer.gov

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)-53-0-9600/310-854-0957
Fax: (510)-53-0-6100
Email: ebmrf@comcast.net
Internet: http://www.ebkids.org

Friends of Cancer Research
2231 Crystal Drive
Suite 200
Arlington, VA 22202
Tel: (703)302-1503
Fax: (703)302-1568
Email: info@focr.org
Internet: http://www.focr.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

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: 1/28/2008
Copyright 1984, 1985, 1986, 1987, 1988, 1989, 1990, 1991, 1992, 1993, 1994, 1995, 1996, 1997, 1999, 2002, 2005, 2006, 2007, 2008 National Organization for Rare Disorders, Inc.

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