National Organization for Rare Disorders, Inc.
It is possible that the main title of the report Epidermolysis Bullosa is not the name you expected.
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.
Australasian Blistering Diseases Foundation
- St. George Hospital
- Department of Dermatology
- Sydney, NSW 2217
- Tel: 02 9113 2543
- Fax: 02 9113 2886
- Email: firstname.lastname@example.org
- Website: http://blisters.org.au/
- 13 Wellington Business Park
- Dukes Ride
- Berkshire, RG45 6LS
- United Kingdom
- Tel: 441344771961
- Fax: 441344762661
- Email: email@example.com
- Website: http://www.debra.org.uk
Debra of America, Inc. (Dystrophic Epidermolysis Bullosa)
- 75 Broad Street
- Suite 300
- New York, NY 10004
- Tel: (212)868-1573
- Fax: (212)868-9296
- Tel: (866)332-7276
- Email: firstname.lastname@example.org
- Website: http://www.debra.org
EB Medical Research Foundation
- 2757 Anchor Ave
- Los Angeles, CA 90064
- Tel: (310)854-0957
- Email: email@example.com
- Website: 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
- Website: http://rarediseases.info.nih.gov/GARD/
- 43 New Scotland Ave., MC-28
- Albany Medical Center
- Albany, NY 12208-3478
- Tel: (518)262-5079
- Fax: (518)262-5528
- Tel: (800)776-6539
- Email: firstname.lastname@example.org
- Website: http://www.oley.org
Turner Syndrome Support Society (UK)
- 13 Simpson Court
- 11 South Ave
- Clydebank, G81 2NR
- Tel: 0141 952 8006
- Fax: 0141 952 8025
- Tel: 0845 2307520
- Email: Turner.Syndrome@tss.org.uk
- Website: http://www.tss.org.uk
Turner's Syndrome Society of Canada
- 30 Cleary Avenue
- Ontario, K2A 4A1
- Tel: 6133212267
- Fax: 6133212268
- Tel: 8004656744
- Email: email@example.com
- Website: http://www.turnersyndrome.ca/
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, 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.
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.
Last Updated: 7/10/2015
Copyright 2013 National Organization for Rare Disorders, Inc.
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