Epidermolysis Bullosa

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

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

Macular Degeneration International
6700 N. Oracle Rd
Suite 505
Tucson, AZ 85704
Fax: (520)797-8018
Tel: (800)683-5555
Email: TPerski@aol.com
Internet: http://www.maculardegeneration.org

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

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: 7/23/2007
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