Important It is possible that the main title of the report Epidermolysis Bullosais not the name you expected.
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) 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
MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network 150 Custer Court Green Bay, WI 54301-1243 USA Tel: 9203365333 Fax: 9203390995 Tel: 8773365333 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. (r) (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: 1/9/2008 Copyright 1984, 1985, 1986, 1987, 1988, 1989, 1990, 1991, 1992, 1993, 1994, 1995, 1996, 1997, 1999, 2002, 2005, 2006, 2007, 2008National Organization for Rare Disorders, Inc.
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