Health Library Jervell and Lange-Nielsen SyndromeFrom Healthwise

National Organization for Rare Disorders, Inc.

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It is possible that the main title of the report Jervell and Lange-Nielsen 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.

• Cardioauditory Syndrome of Jervell and Lange-Nielsen
• Cardioauditory Syndrome
• Deafness, Congenital, and Functional Heart Disease
• Surdocardiac Syndrome
• Autosomal Recessive Long QT Syndrome

• None

Jervell and Lange-Nielsen syndrome is a rare inherited disorder characterized by deafness present at birth (congenital) occurring in association with abnormalities affecting the electrical system of the heart. The severity of cardiac symptoms associated with Jervell and Lange-Nielsen syndrome varies from case to case. Some individuals may have no apparent symptoms (asymptomatic); others may develop abnormally increased heartbeats (tachyarrhythmias) resulting in episodes of unconsciousness (syncope), cardiac arrest, and potentially sudden death. Physical activity, excitement or stress may trigger the onset of these symptoms. Jervell and Lange-Nielsen syndrome is usually detected during early childhood and is inherited as an autosomal recessive trait.
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International Long QT Syndrome Registry
P.O. Box 653
University of Rochester Medical Center
Rochester, NY 14642-8653
Tel: (585)276-0016
Fax: (585)273-5283

Deafness Research Foundation
8201 Greensboro Drive
Third Floor
McLean, VA 22102
United States
Tel: 7036109025
Fax: 7036109005
Tel: 8008295934
Email: drf@drf.org

American Heart Association
National Center
7272 Greenville Avenue
Dallas, TX 75231-4596
Tel: (214)373-6300
Fax: (214)373-0268
Tel: (800)242-8721
Email: inquire@heart.org
Internet: http://www.americanheart.org

Sudden Arrhythmia Death Syndromes Foundation
508 E South Temple #20
Salt Lake City, UT 84102
USA
Tel: 8015310937
Fax: 8015310945
Tel: 8007867723
Email: sads@sads.org
Internet: http://www.sads.org

Deaf Communications Institute
P.O. Box 247
Fayville, MA 01745
Tel: (617)872-9496

EAR (Education and Auditory Research) Foundation
P.O. Box 330867
Nashville, TN 37203
Tel: (615)627-2724
Tel: (800)545-4327
TDD: (615)284-7849
Email: suzanne@earfoundation.org
Internet: http://www.earfoundation.org

NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov

Cardiac Arrhythmias Research and Education Foundation, Inc.
26425 NE Allen Street #103
P.O. Box 369
Duvall, WA 98019
USA
Tel: 4257881987
Fax: 4257881927
Tel: 8004049500
Email: care@longqt.org
Internet: http://www.longqt.org/

European Long QT Syndrome Information Center
Web Site on the Internet
Ronnerweg 2
Nidau, Intl 2560
Switzerland
Tel: 0041794741535
Email: info@qtsyndrome.ch
Internet: http://www.qtsyndrome.ch

American Academy of Audiology
11730 Plaza America
#300
Reston, VA 20190
Tel: (703)790-8466
Fax: (703)790-8631
Tel: (800)222-2336
Email: info@audiology.org
Internet: http://www.audiology.org

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:  5/5/2008
Copyright  1991, 1996, 1997, 2003 National Organization for Rare Disorders, Inc.

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