Usher Syndrome

National Organization for Rare Disorders, Inc.

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Important
It is possible that the main title of the report Usher Syndrome is not the name you expected.

Disorder Subdivisions

  • None

General Discussion

Usher syndrome is a rare inherited disorder primarily characterized by deafness due to an impaired ability of the auditory nerves to transmit sensory input to the brain (sensorineual hearing loss) accompanied by retinitis pigmentosa, a disorder that causes progressive loss of vision. Researchers have identified three types of Usher syndrome and debated the existence of a fourth type. The age at which the disorder appears along with the severity of symptoms distinguishes the different types of Usher syndrome. Usher syndrome is inherited as an autosomal recessive genetic trait. The possible fourth type of Usher syndrome may be inherited as an X-linked genetic trait.

Supporting Organizations

Alexander Graham Bell Association for the Deaf and Hard of Hearing

3417 Volta Place NW
Washington, DC 20007-2778
United States
Tel: (202)337-5220
Fax: (202)337-8314
Tel: (866)337-5220
Email: info@agbell.org
Website: http://www.agbell.org

American Academy of Audiology

11480 Commerce Park Drive
Suite 220
Reston, VA 20191
Tel: 703-790-8466
Fax: 703-790-8631
Tel: 800-222-2336
Email: infoaud@audiology.org
Website: http://www.audiology.org

American Council of the Blind

2200 Wilson Boulevard
Suite 650
Arlington, VA 22201
Tel: (202)467-5081
Fax: (202)465-5085
Tel: (800)424-8666
Email: info@acb.org
Website: http://www.acb.org/

American Foundation for the Blind

2 Penn Plaza
Suite 1102
New York, NY 10121
Tel: (212)502-7600
Fax: (888)545-8331
Tel: (800)232-5463
Email: afbinfo@afb.net
Website: http://www.afb.org

American Society for Deaf Children

800 Florida Avenue NE
2047
Washington, DC 20002-3695
Tel: (866)895-4206
Fax: (410)795-0965
Tel: (800)942-2732
Email: asdc@deafchildren.org
Website: http://www.deafchildren.org

Coalition for Usher Syndrome Research

2 Clock Tower Place
Suite 418
Maynard, MA 1754
Tel: (978)637-2625
Fax: (978)637-2618
Email: m.dunning@lek.com
Website: http://www.usher-syndrome.org

Foundation Fighting Blindness

7168 Columbia Gateway Drive, Suite 100
Columbia, MD 21046
Tel: (410)423-0600
Fax: (410)872-0574
Tel: (800)683-5555
Email: info@FightBlindness.org
Website: http://www.blindness.org/

Foundation Fighting Blindness (Canada)

890 Yonge Street, 12th Floor
Toronto, Ontario, M4W 3P4
Canada
Tel: 4163604200
Fax: 4163600060
Tel: 8004613331
Email: info@ffb.ca
Website: http://www.ffb.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/

Hearing Health Foundation

363 Seventh Avenue, 10th Floor
New York, NY 10016-3904
United States
Tel: (212)257-6140
Fax: (212)257-6139
Tel: (866)454-3924
Email: info@hearinghealthfoundation.org
Website: http://hearinghealthfoundation.org/home

Let Them Hear Foundation

1900 University Avenue, Suite 101
East Palo Alto, CA 94303
Tel: (650)462-3174
Fax: (650)462-3144
Email: info@letthemhear.org
Website: http://www.letthemhear.org

NIH/National Eye Institute

31 Center Dr
MSC 2510
Bethesda, MD 20892-2510
United States
Tel: (301)496-5248
Fax: (301)402-1065
Email: 2020@nei.nih.gov
Website: http://www.nei.nih.gov/

NIH/National Institute on Deafness and Other Communication Disorders

31 Center Drive, MSC 2320
Communication Avenue
Bethesda, MD 20892-3456
Tel: (301)402-0900
Fax: (301)907-8830
Tel: (800)241-1044
Email: nidcdinfo@nidcd.nih.gov
Website: http://www.nidcd.nih.gov

National Association for Parents of Children with Visual Impairments (NAPVI)

P.O. Box 317
Watertown, MA 02272-0317
Tel: (617)972-7441
Fax: (617)972-7444
Tel: (800)562-6265
Email: napvi@perkins.org
Website: http://www.napvi.org

National Consortium on Deaf-Blindness

The Teaching Research Institute
345 N. Monmouth Avenue
Monmouth, OR 97361
Tel: (800)438-9376
Fax: (503)838-8150
Tel: (800)438-9376
Email: info@nationaldb.org
Website: http://www.nationaldb.org

National Federation of the Blind

200 East Wells Street
at Jernigan Place
Baltimore, MD 21230
USA
Tel: (410)659-9314
Fax: (410)685-5653
Email: nfb@nfb.org
Website: http://www.nfb.org

Perkins School for the Blind

175 North Beacon Street
Watertown, MA 2472
Tel: (617)924-3434
Fax: (617)926-2027
Email: Info@Perkins.org
Website: http://www.Perkins.org

Retina International

Ausstellungsstrasse 36
CH-8005
Z rich,
Switzerland
Tel: 410444441077
Fax: 410444441070
Email: christina.fasser@retina-international.org
Website: http://www.retina-international.org

Retinitis Pigmentosa International

P.O. Box 900
Woodland Hills, CA 91365
Tel: (818)992-0500
Fax: (818)992-3265
Tel: (800)344-4877
Email: info@rpinternational.org
Website: http://www.rpinternational.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:  5/11/2008
Copyright  2005 National Organization for Rare Disorders, Inc.