Ehlers Danlos Syndrome
National Organization for Rare Disorders, Inc.
It is possible that the main title of the report Ehlers Danlos Syndrome 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.
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.
- PO Box 1382
- Mays Landing, NJ 8330
- Tel: (609)625-3182
- Email: email@example.com
- Website: http://www.edstoday.org
Ehlers Danlos Foundation of New Zealand
- 368 Butler Road, RD 3
- Waipawa 4273
- Hawkes Bay,
- New Zealand
- Tel: 64068747799
- Fax: 64068747799
- Email: firstname.lastname@example.org
- Website: http://www.edfnz.org.nz
Ehlers-Danlos National Foundation
- 7918 Jones Branch Drive
- Suite 300
- McLean, VA 22102
- Tel: (703)506-2892
- Fax: (703)506-3266
- Email: email@example.com
- Website: http://www.ednf.org
Ehlers-Danlos Support Group UK
- PO Box 748
- Borehamwood, WD6 9HU
- United Kingdom
- Tel: 2087365604
- Email: firstname.lastname@example.org
- Website: http://www.ehlers-danlos.org
European Skeletal Dysplasia Network
- Institute of Genetic Medicine
- Newcastle University
- Newcastle upon Tyne, NE1 3BZ
- United Kingdom
- Tel: 441612755642
- Fax: 441612755082
- Email: email@example.com
- Website: http://www.esdn.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/
NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases
- Information Clearinghouse
- One AMS Circle
- Bethesda, MD 20892-3675
- Tel: (301)495-4484
- Fax: (301)718-6366
- Tel: (877)226-4267
- Email: NIAMSinfo@mail.nih.gov
- Website: http://www.niams.nih.gov/
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
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 firstname.lastname@example.org
Last Updated: 12/22/1969
Copyright 2007 National Organization for Rare Disorders, Inc.
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