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Copyright 1986, 1987, 1990, 1991, 1992, 1996, 1997, 1998, 1999, 2000, 2002, 2007
Synonyms of Ehlers Danlos Syndrome
Disorder Subdivisions
- Ehlers Danlos syndrome, arthrochalasia type
- Ehlers Danlos syndrome, cardiac valvular form
- Ehlers Danlos syndrome, classic type
- Ehlers Danlos syndrome, dermatosparaxis type
- Ehlers Danlos syndrome, hypermobility type
- Ehlers Danlos syndrome, kyphoscoliotic type
- Ehlers Danlos syndrome, progeroid form
- Ehlers Danlos syndrome, vascular type
General Discussion
Ehlers-Danlos syndrome (EDS) is a group of hereditary connective tissue disorders characterized by defects of the major structural protein in the body (collagen). Collagen, a tough, fibrous protein, plays an essential role in holding together, strengthening, and providing elasticity to bodily cells and tissues. Due to defects of collagen, primary EDS symptoms and findings include abnormally flexible, loose joints (articular hypermobility) that may easily become dislocated; unusually loose, thin, stretchy (elastic) skin; and excessive fragility of the skin, blood vessels, and other bodily tissues and membranes.
The different types of EDS were originally categorized in a classification system that used Roman numerals (e.g., EDS I to EDS XI), based upon each form’s associated symptoms and findings (clinical evidence) and underlying cause. A revised, simplified classification system (revised nosology) has since been described in the medical literature that categorizes EDS into six major subtypes, based upon clinical evidence, underlying biochemical defects, and mode of inheritance.
Each subtype of EDS is a distinct hereditary disorder that may affect individuals within certain families (kindreds). In other words, parents with one subtype of EDS will not have children with another EDS subtype. Depending upon the specific subtype present, Ehlers-Danlos syndrome is usually transmitted as an autosomal dominant or autosomal recessive trait.
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Organizations related to Ehlers Danlos Syndrome
- EDS Today
6545 Lake Drive
Mays Landing NJ 08330
Phone #: 609-625-3182
800 #: N/A
e-mail: info@edstoday.org
Home page: http://www.edstoday.org
- Ehlers Danlos Foundation of New Zealand
368 Butler Road, RD 3
Waipawa 4273
Hawkes Bay None None
Phone #: 64--06 -874-7799
800 #: N/A
e-mail: flopsy@ihug.co.nz
Home page: http://www.edfnz.org.nz
- Ehlers-Danlos National Foundation (EDNF)
3200 Wilshire Blvd.
Suite 1601
South Tower
Los Angeles CA 90010
Phone #: 213-368-3800
800 #: 800-956-2902
e-mail: staff@ednf.org
Home page: http://www.ednf.org
- Ehlers-Danlos Support Group UK
PO Box 337
Aldershot
Surrey Intl GU12 6WZ
Phone #: +44- 01-252 690 940
800 #: N/A
e-mail: director@ehlers-danlos.org
Home page: http://www.ehlers-danlos.org
- European Skeletal Dysplasia Network (ESDN)
Wellcome Trust Centre for Cell-Matrix Research
Faculty of Life Sciences
University of Manchester
Michael Smith Building, Oxford Road
Manchester None M13 9PT
Phone #: 44 -161- 275 5642
800 #: N/A
e-mail: info@esdn.org
Home page: http://www.esdn.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
- NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda MD 20892-3675
Phone #: 301-495-4484
800 #: 877-226-4267
e-mail: NIAMSinfo@mail.nih.gov
Home page: http://www.niams.nih.gov/Health_Info
- Sjældne Diagnoser / Rare Disorders Denmark
Frederiksholms Kanal 2, 3rd Floor
Copenhagen K None 1220
Phone #: 45 -33 -14 00 10
800 #: N/A
e-mail: mail@sjaeldnediagnoser
Home page: http://www.raredisorders.dk
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