National Organization for Rare Disorders, Inc.
It is possible that the main title of the report Lymphedema-Distichiasis Syndrome is not the name you expected.
Lymphedema-distichiasis syndrome is a rare genetic multisystem disorder characterized by swelling of the legs because of fluid accumulation and the development of extra eyelashes (distichiasis). Distichiasis may range from a few extra lashes to a full set of extra eyelashes. Swelling most often affects both legs (bilateral) and usually occurs around puberty. Additional anomalies sometimes associated with this disorder include early onset varicose veins, droopy eyelids (ptosis), cardiac (heart) defects, cleft palate, abnormal heart rhythm, and abnormal curvature of the spine (scoliosis). Lymphedema-distichiasis syndrome is caused by mutations of the FOXC2 gene and is inherited as an autosomal dominant trait.
Canadian Lymphedema Framework
- 4800 Dundas Street W
- Suite 204
- Toronto, Ontario, M9A 1B1
- Tel: (1) 647-693-1083
- Email: firstname.lastname@example.org
- Website: http://canadalymph.ca/
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/
Lymphatic Education & Research Network
- 261 Madison Avenue
- 9th Floor
- New York, NY 10016
- Tel: 516-625-9675
- Fax: 516-625-9410
- Email: LERN@LymphaticNetwork.org
- Website: http://www.lymphaticnetwork.org
March of Dimes
- 1275 Mamaroneck Avenue
- White Plains, NY 10605
- Tel: (914)997-4488
- Fax: (914)997-4763
- Email: AskUs@marchofdimes.org or email@example.com
- Website: http://www.marchofdimes.org and nacersano.org
NIH/National Heart, Lung and Blood Institute
- P.O. Box 30105
- Bethesda, MD 20892-0105
- Tel: (301)592-8573
- Fax: (301)251-1223
- Email: firstname.lastname@example.org
- Website: http://www.nhlbi.nih.gov/
National Lymphedema Network, Inc.
- 2288 Fulton Street
- Suite 307
- Berkeley, CA 94704
- Tel: 510-809-1660
- Fax: 510-809-1699
- Tel: 800-541-3259
- Email: email@example.com
- Website: http://www.lymphnet.org
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, 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.
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.
Last Updated: 4/27/2015
Copyright 2015 National Organization for Rare Disorders, Inc.
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