Diseases & Conditions


A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

Usher Syndrome


Synonyms of Usher Syndrome
  • Hereditary Deafness-Retinitis Pigmentosa
  • Retinitis Pigmentosa and Congenital Deafness

Disorder Subdivisions

  • Usher Type I
  • Usher Type II
  • Usher Type III
  • Usher Type IV


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.

Organizations related to Usher Syndrome
  • Alexander Graham Bell Association for the Deaf, Inc.
    3417 Volta Place, NW
    Washington D.C. 20007-2778
    Phone #: 202-337-5220
    800 #: 866-337-5220
    e-mail: info@agbell.org
    Home page: http://www.agbell.org
  • American Academy of Audiology
    11730 Plaza America
    Reston VA 20190
    Phone #: 703-790-8466
    800 #: 800-222-2336
    e-mail: info@audiology.org
    Home page: http://www.audiology.org
  • American Council of the Blind, Inc.
    1155 15th Street
    Washington DC 20005
    Phone #: 202-467-5081
    800 #: 800-424-8666
    e-mail: N/A
    Home page: http://www.acb.org
  • American Foundation for the Blind
    11 Penn Plaza
    New York NY 10001
    Phone #: 212-502-7600
    800 #: 800-232-5463
    e-mail: afbinfo@afb.org
    Home page: http://www.afb.org
  • American Society for Deaf Children
    PO Box 3355
    Gettysburg PA 17325
    Phone #: 800-942-6084
    800 #: 800-942-2732
    e-mail: ASDC1@aol.com
    Home page: http://www.deafchildren.org
  • Blind Children's Center
    4120 Marathon Street
    Los Angeles CA 90029-3584
    Phone #: 323-664-2153
    800 #: 800-222-3566
    e-mail: info@blindchildrenscenter.org
    Home page: http://www.blindchildrenscenter.org
  • Blind Children's Fund
    311 W. Broadway
    Mt. Pleasant MI 48858
    Phone #: 989-779-9966
    800 #: --
    e-mail: bcf@blindchildrensfund.org
    Home page: http://www.blindchildrensfund.org
  • Chromosome
    11435 Cronhill Drive
    Owings Mills MD 21117-2220
    Phone #: 410-568-0150
    800 #: 800-683-5555
    e-mail: info@blindness.org
    Home page: http://www.fightblindness.org
  • Council of Families with Visual Impairment
    1155 15th St. NW
    Washington DC 20005
    Phone #: 202-465-5081
    800 #: --
    e-mail: info@acb.org
    Home page: http://www.acb.org/
  • Deafness Research Foundation
    8201 Greensboro Drive
    McLean VA 22102
    Phone #: 703-610-9025
    800 #: 800-829-5934
    e-mail: drf@drf.org
    Home page: N/A
  • Foundation Fighting Blindness (Canada)
    60 St. Clair Ave East
    Toronto, Ontario None M4T 1N5
    Phone #: 416--36-0-4200
    800 #: 800--46-1-3331
    e-mail: info@ffb.ca
    Home page: http://www.ffb.ca
  • Let Them Hear Foundation
    1900 University Ave #101
    East Palo Alto CA 94303
    Phone #: 650-462-3143
    800 #: 877-735-2929
    e-mail: info@letthemhear.org
    Home page: http://www.letthemhear.org
  • MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
    150 Custer Court
    Green Bay WI 54301-1243
    Phone #: 920-336-5333
    800 #: 877-336-5333
    e-mail: mums@netnet.net
    Home page: http://www.netnet.net/mums/
  • Madisons Foundation
    PO Box 241956
    Los Angeles CA 90024
    Phone #: 310-264-0826
    800 #: N/A
    e-mail: getinfo@madisonsfoundation.org
    Home page: http://www.madisonsfoundation.org
  • NIH/National Eye Institute
    Building 31 Rm 6A32
    Bethesda MD 20892-2510
    Phone #: 301-496-5248
    800 #: --
    e-mail: 2020@nei.nih.gov
    Home page: http://www.nei.nih.gov/
  • NIH/National Institute on Deafness and Other Communication Disorders (Balance)
    National Temporal Bone, Hearing
    Boston MA 02114-3096
    Phone #: --
    800 #: 800-822-1327
    e-mail: TBRegistry@meei.harvard.edu
    Home page: http://www.tbregistry.org
  • National Association for Parents of Children with Visual Impairments (NAPVI)
    P.O. Box 317
    Watertown MA 02472
    Phone #: 617-972-7441
    800 #: 800-562-6265
    e-mail: napvi@perkins.org
    Home page: http://www.napvi.org
  • National Association for Visually Handicapped
    22 West 21st Street
    New York NY 10010
    Phone #: 212-889-3141
    800 #: --
    e-mail: staff@navh.org
    Home page: http://www.navh.org
  • National Consortium on Deaf-Blindness (NCDB)
    The Teaching Research Institute
    Monmouth OR 97361
    Phone #: 800-438-9376
    800 #: 800-438-9376
    e-mail: info@nationaldb.org
    Home page: http://www.nationaldb.org
  • National Federation of the Blind
    1800 Johnson Street
    Baltimore MD 21230
    Phone #: 410-659-9314
    800 #: --
    e-mail: nfb@nfb.org
    Home page: http://www.nfb.org
  • Perkins School for the Blind
    175 North Beacon St.
    Watertown MA 02472
    Phone #: 617-924-3434
    800 #: N/A
    e-mail: Info@Perkins.org
    Home page: http://www.Perkins.org
  • Retina International
    Ausstellungsstrasse 36
    Z?rich None None
    Phone #: (0)-44 -444 10 77
    800 #: N/A
    e-mail: c.fasser@e-link.ch
    Home page: http://www.retina-international.org
  • Retinitis Pigmentosa International
    P.O. Box 900
    Woodland Hills CA 91365
    Phone #: 818-992-0500
    800 #: 800-344-4877
    e-mail: info@international.org
    Home page: http://www.rpinternational.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