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.
epidermolysis bullosa simplex
junctional epidermolysis bullosa
dystrophic epidermolysis bullosa
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) 16 East 41st Street 3rd Floor New York, NY 10017 Tel: (212)868-1573 Fax: (212)868-9296 Tel: (866)332-7276 Email: email@example.com Internet: http://www.debra.org
Oley Foundation 214 Hun Memorial MC-28 Albany Medical Center Albany, NY 12208-3478 USA Tel: (518)262-5079 Fax: (518)262-5528 Tel: (800)776-6539 Email: firstname.lastname@example.org Internet: http://www.oley.org
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: email@example.com Internet: http://www.chdct2.org/
DebRA 13 Wellington Business Park Dukes Ride Crowthorne Berkshire, RG45 6LS United Kingdom Tel: 441344771961 Fax: 441344762661 Email: firstname.lastname@example.org Internet: http://www.debra.org.uk
EB Medical Research Foundation 2757 Anchor Ave Los Angeles, CA 90064 Tel: (310)854-0957 Email: email@example.com Internet: http://www.ebkids.org
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: firstname.lastname@example.org Internet: http://www.ebanusa.org
Australasian Blistering Diseases Foundation St. George Hospital, Department of Dermatology Gray Street Kogarah Sydney, NSW 2217 Australia Tel: 0291132088 Fax: 0291132886 Email: email@example.com 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
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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 firstname.lastname@example.org
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