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 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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Copyright 1984, 1985, 1986, 1987, 1988, 1989, 1990, 1991, 1992, 1993, 1994, 1995, 1996, 1997, 1999, 2002, 2005, 2006, 2007, 2008, 2009
NORD is very grateful to Anne W. Lucky, MD, Children's Hospital of Cincinnati; Mary Sprague, Executive Director, DebRA of America, Inc.; Geraldine Kelly-Mancuso, RN, Cincinnati Children's Hospital Medical Center, for assistance in the preparation of this report.
Synonyms of Epidermolysis Bullosa
Disorder Subdivisions
- dystrophic epidermolysis bullosa
- epidermolysis bullosa simplex
- junctional epidermolysis bullosa
General Discussion
Epidermolysis bullosa (EB) is a genetic skin disorder characterized clinically by blister formation from mechanical trauma. There are three 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.
Organizations related to Epidermolysis Bullosa
- Australasian Blistering Diseases Foundation
St. George Hospital
Department of Dermatology
Gray Street
KOGARAH NSW 2217
None None None
Phone #: 02 -911-3 2543
800 #: N/A
e-mail: N/A
Home page: N/A
- DebRA
13 Wellington Business Park
Dukes Ride
Crowthorne
Berkshire None RG45 6LS
Phone #: +44- 13-44 771961
800 #: --
e-mail: debra@debra.org.uk
Home page: http://www.debra.org.uk
- Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (DEBRA)
16 East 41st Street
Third Floor
New York NY 10017
Phone #: 212-868-1573
800 #: 866-332-7276
e-mail: staff@debra.org
Home page: http://www.debra.org
- EB Medical Research Foundation
8909 W. Olympic Blvd. #222
Beverly Hills CA 90211
Phone #: 310-854-0957
800 #: --
e-mail: a.pett@bep-la.com
Home page: http://www.ebkids.org
- Epidermolysis Bullosa Action Network (EBAN, Inc.)
16613 Milan De Avila
Tampa FL 33613
Phone #: 813-325-1955
800 #: N/A
e-mail: silvia@ebanusa.org
Home page: http://www.ebanusa.org
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Home page: http://rarediseases.info.nih.gov/GARD
- MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: mums@netnet.net
Home page: http://www.netnet.net/mums/
- Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: getinfo@madisonsfoundation.org
Home page: http://www.madisonsfoundation.org
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