Important
It is possible that the main title of the report Marfan 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.
Synonyms
- Arachnodactyly
- Contractural Arachnodactyly
- Dolichostenomelia
- Marfanoid Hypermobility Syndrome
General Discussion
Marfan syndrome is an inherited disorder that affects the connective tissue of the heart and blood vessels (cardiovascular system). The musculoskeletal system (ligaments and muscles) and ocular system (eyes) are also affected. Major symptoms also include unusual height, large hands and feet, and involvement of the lungs. Symptoms vary greatly among affected individuals. Marfan syndrome is inherited as an autosomal dominant trait.
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Resources
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)428-7100
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com
National Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 11050
Tel: (516)883-8712
Fax: (516)883-8040
Tel: (800)862-7326
Email: staff@marfan.org
Internet: http://www.marfan.org
NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda, MD 20892-3675
USA
Tel: 3014954484
Fax: 3017186366
Tel: 8772264267
TDD: 3015652966
Email: NIAMSinfo@mail.nih.gov
Internet: http://www.niams.nih.gov
British Coalition of Heritable Disorders of Connective Tissue
Rochester House
5 Aldershot Road
Fleet
Hampshire, GU13 9NG
United Kingdom
Tel: 01252 810472
Fax: 01252 810473
Internet: http://www.Business-Partners.co.uk/marfan
Marfan Association UK
Rochester House
5 Aldershot Road
Fleet
Hampshire, GU51 3NG
United Kingdom
Tel: 01252 810472
Fax: 01252 810473
Email: marfan@tinyonline.co.uk
Internet: http://www.marfan.org.uk
Canadian Marfan Association
Centre Plaza Postal Outlet
128 Queen Street South
P.O. Box 42257
Mississauga
Ontario, L5M 4Z0
Canada
Tel: 9058263223
Fax: 9058262125
Tel: 8667221722
Email: info@marfan.ca
Internet: http://www.marfan.ca
Sjældne Diagnoser / Rare Disorders Denmark
Frederiksholms Kanal 2, 3rd Floor
Copenhagen K, 1220
Denmark
Tel: 45 33 14 00 10
Fax: 45 33 14 55 09
Email: mail@sjaeldnediagnoser
Internet: http://www.raredisorders.dk
Let Them Hear Foundation
1900 University Ave #101
East Palo Alto, CA 94303
Tel: (650)462-3143
Fax: (650)462-3143
Tel: (877)735-2929
Email: info@letthemhear.org
Internet: http://www.letthemhear.org
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html
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 orphan@rarediseases.org
Last Updated: 10/9/2007
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