Klippel-Trenaunay Syndrome

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Klippel-Trenaunay 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

  • Angio-Osteohypertrophy Syndrome
  • Congenital Dysplastic Angiectasia
  • Hemangiectatic Hypertrophy
  • Klippel-Trenaunay-Weber Syndrome
  • KTW Syndrome
  • Osteohypertrophic Nevus Flammeus
  • KTS

Disorder Subdivisions

  • None

General Discussion

Klippel-Trenaunay Syndrome, a rare disorder that is present at birth (congenital). Klippel-Trenaunay syndrome consists of the triad of cutaneous capillary malformation (port-wine stain), bone and soft tissue hypertrophy, and venous varicosities. Lymphatic malformations also can be present. The symptoms and findings associated with the disorder vary in range and severity from case to case.

Resources

Nevus Network
The Congenital Nevus Support Group
P.O. Box 305
West Salem, OH 44287
USA
Tel: (419)853-4525
Fax: (405)377-3403
Email: info@nevusnetwork.org
Internet: http://www.nevusnetwork.org

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

Sturge-Weber Foundation
PO Box 418
Mt. Freedom, NJ 07970
Tel: (973)895-4445
Fax: (973)895-4846
Tel: (800)627-5482
Email: swf@sturge-weber.org
Internet: http://www.sturge-weber.org

Klippel-Trenaunay Support Group
5404 Dundee Road
Edina, MN 55436
Tel: (513)722-7724
Fax: (952)925-2596
Email: ktnewmembers@gmail.com
Internet: http://www.k-t.org

National Institute of Neurological Disorders and Stroke (NINDS)
P.O. Box 5801
Bethesda, MD 20824
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
TDD: (301)468-5981
Email: me20t@nih.gov
Internet: http://www.ninds.nih.gov/

Lymphovenous Canada
8 Silver Ave
Toronto
Ontario, Intl M6R 1X8
Canada
Tel: 416-533-2428
Email: info@lymphovenous-canada.ca
Internet: http://www.lymphovenous-canada.ca

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

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
TDD: (888)205-3223
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: getinfo@madisonsfoundation.org
Internet: http://www.madisonsfoundation.org

National Organization of Vascular Anomalies
PO Box 38216
Greensboro, NC 27438-8216
Email: Khall@mail.novanews.org
Internet: http://www.novanews.org

Hemihypertrophy Support
4581 Magnolia Dr.
Suffolk, VA 23435
Tel: (757)615-3686
Email: hemihypertrophy@yahoogroups.com
Internet: http://www.hemisupport.com

For a Complete Report

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

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