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American Academy of Otolaryngology--Head and Neck Surgery (AAO-HNS)

Executive Vice President: David R. Nielsen, M.D.
Public Information Contact: Jeanne McIntyre, Director of Communications
Address: 1650 Diagonal Road
Voice: (703) 836-4444
Fax: (703) 683-5100
Last updated: 2014 Apr 25

Description:
The nonprofit American Academy of Otolaryngology—Head and Neck Surgery (AAO-HNS) strives to unite, serve, and represent the interests of ear, nose, and throat specialists and their patients to the public, government, other medical specialists, and related organizations. AAO-HNS provides leaflets and geographic lists of physicians to the public at no charge. Holds annual meeting; contact AAO-HNS for date and location. AAO-HNS provides a professional bulletin, journal, directory, books, and other materials. Professional/consumer publications are available online and in print, with some in Spanish.

Publications:
The Bulletin
Frequency: monthly
Type: professional magazine
Otolaryngology--Head and Neck Surgery
Frequency: monthly
Type: scientific journal

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American Neurotology Society (ANS)

President: Jeffrey T. Vrabec, M.D.
Public Information Contact: Kristen Bordignon, Administrator
Address: Administrative Office, 1980 Warson Road
Voice: (217) 638-0801
Fax: (217) 679-1677
Last updated: 2011 Jun 30

Description:
The American Neurotology Society (ANS) is composed of physicians and audiologists devoted to the fields of neurotology and otology. The purpose of ANS is to exchange and disseminate information about the physiology, pathology, and clinical management of the sensorineural systems of audition and equilibrium, and to stimulate education and basic and clinical research relating to these systems. Holds two scientific meetings per year, which are open to anyone in the health sciences and particularly to individuals with major interest areas in hearing and balance. For meeting dates and locations, contact the ANS administrative office.

Publications:
Otology & Neurotology Journal
Frequency: ten times/year
Type: professional journal

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American Speech-Language-Hearing Association (ASHA)

Executive Director: Arlene A. Pietranton, Ph.D., C.A.E.
Public Information Contact: ASHA Action Center
Address: 2200 Research Boulevard
Voice: (301) 296-5700
Toll-free Voice: (800) 638-8255
TTY: (301) 296-5650
Last updated: 2014 May 5

Description:
The mission of the American Speech-Language-Hearing Association (ASHA) is to promote the interests of and provide the highest quality services for professionals in audiology, speech-language pathology, and speech and hearing science, and to advocate for people with communication disabilities. Holds annual conference; contact ASHA for date and location. Professional brochures/pamphlets, journals, and professional/consumer online publications are available. Some materials are available in Spanish.

Publications:
American Journal of Audiology
Frequency: semiannual
Type: journal
American Journal of Speech-Language Pathology
Frequency: quarterly
Type: journal
ASHA Leader
Frequency: at least monthly
Type: newspaper

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Advocure NF2, Inc.

Chairperson: Marie Drew
Treasurer: Cynthia Henrion
Address: P.O. Box 4118
Last updated: 2011 Jun 30

Description:
Neurofibromatosis Type II (NF2) is a rare, genetic disease that causes tumors to grow throughout the brain and spinal cord, threatening hearing, vision, mobility, and even basic life functions such as swallowing. Advocure NF2, Inc., is a 501(c)(3) public charity and liaison group that advocates for the NF2 Crew (an online-based support community for patients and others) and the NF2 international community. Advocure NF2, Inc., monitors research and drug developments worldwide and works to expedite systemic therapy that may treat and possibly even cure NF2. Its website offers information on understanding and living with NF2, research, and other resources. A quarterly newsletter is available online.

Publications:
NF2 Compass
Frequency: quarterly
Type: newsletter
Frequency:
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Hear Me Foundation

Executive Director: Tamala Irish
Executive Director: Tamala Irish
Address: 4814 Woodstream Village Drive
Voice: (281) 359-6725
Fax: (281) 361-9109
Last updated: 2011 Jun 30

Description:
The mission of the Hear Me Foundation is to promote positive life experiences via camp activities and year-round events primarily for oral-deaf and hard-of-hearing children, their siblings, and their families. The Hear Me Foundation provides families with the resources to learn specific skills necessary to monitor their child’s healthy development, including listening, speech, language, and emotional and socialization skills. The foundation also is a service provider for the Interactive Metronome, a training system to improve a child’s coordination, focus, and attention span. Holds annual meeting (Camp Hear Me); contact the Hear Me Foundation for date and location.

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Hearing Health Foundation

Executive Director: Andrea Boidman
Address: 363 Seventh Avenue, 10th Floor
Voice: (212) 257-6140
Toll-free Voice: (866) 454-3924
TTY: (888) 435-6104
Toll-free TTY: (888) 435-6104
Fax: (212) 257-6139
Internet: http://hhf.org
Last updated: 2014 Apr 30

Description:
Hearing Health Foundation is the largest private funder of hearing research, with a mission to prevent and cure hearing loss through groundbreaking research. Since 1958, Hearing Health Foundation has given away millions of dollars to hearing and balance research, including work that led to cochlear implant technology and now through the Hearing Restoration Project is working on a cure for hearing loss. Hearing Health Foundation also publishes Hearing Health magazine, a free consumer resource on hearing loss and related technology, research, and products. To learn more, subscribe to our magazine, or support this work, visit www.hhf.org.

Publications:
Hearing Health
Frequency: quarterly
Type: magazine
Hearing Health E-News
Frequency: monthly
Type: e-newsletter

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House Research Institute

Chief Executive Officer: James D. Boswell
Director of Community Education and Outreach: Marilee J. Potthoff
Address: 2100 West Third Street
Voice: (213) 483-4431
TTY: (213) 484-2642
Fax: (213) 483-8789
Last updated: 2014 Apr 30

Description:
The House Research Institute (formerly called the House Ear Institute) is a private, nonprofit 501(c)(3) organization dedicated to advancing hearing science through research and education to improve quality of life. Scientists are exploring the developing ear and ear diseases at the cellular and molecular level as well as investigating the complex ear-brain interaction. They also are working to improve hearing aids and auditory implants, clinical treatments, and intervention methods. Professional/consumer brochures, books, and audiovisuals are available.

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MdDS Balance Disorder Foundation

President: Marilyn Josselyn
Foundation Board Member: Linda McManus
Address: 22406 Shannondell Drive
Voice: (610) 382-2060
Fax: (210) 641-6077
Last updated: 2011 Jun 30

Description:
The MdDS Balance Disorder Foundation is an international, all-volunteer 501(c)(3) organization that seeks to promote awareness of, find a cure for, and assist patients suffering with MdDS. Mal de debarquement syndrome (MdDS) or disembarkment syndrome is a rare disorder of perceived motion that most often develops after an ocean cruise or other type of travel or motion experience. More common in females, MdDS symptoms include persistent and long-lasting sensations of motion (rocking, swaying, or bobbing); this perceived motion is associated with fatigue, imbalance, and impaired cognitive function. MdDS is frequently misdiagnosed or goes undiagnosed because many in the health care community are unaware. Unfortunately, effective MdDS treatments/therapies are lacking and the cause of MdDS remains unknown.

Publications:
Mal de Debarquement Support News
Frequency: quarterly
Type: newsletter

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National Institute on Deafness and Other Communication Disorders (NIDCD)

Director: James F. Battey, Jr., M.D., Ph.D.
Public Information Contact: Susan Dambrauskas, Chief, Office of Health Communication and Public Liaison
Address: Office of Health Communication and Public Liaison, 31 Center Drive, MSC 2320
Voice: (301) 496-7243
Toll-free Voice: (800) 241-1044
Toll-free TTY: (800) 241-1055
Fax: (301) 402-0018
Last updated: 2011 Jun 30

Description:
The National Institute on Deafness and Other Communication Disorders (NIDCD), one of the National Institutes of Health, supports and conducts research and research training on the normal and disordered processes of hearing, balance, taste, smell, voice, speech, and language. The NIDCD develops health information based on scientific discovery and disseminates it to the public. In October 2008, the NIDCD launched It's a Noisy Planet. Protect Their Hearing (www.noisyplanet.nidcd.nih.gov). This national campaign is designed to increase awareness among parents of youth ages 8 to 12 about the causes and prevention of noise-induced hearing loss. The NIDCD provides a toll-free telephone service through its information clearinghouse. Fact sheets, brochures, teaching curricula, and reports are available, with many in Spanish.

Publications:
Inside
Frequency: quarterly
Type: newsletter
NIDCD Resources Directory
Frequency: biannual
Type: print and online directory of organizations and their resources

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National Institute on Deafness and Other Communication Disorders (NIDCD) Information Clearinghouse

Project Officer: Susan Dambrauskas
Address: 1 Communication Avenue
Toll-free Voice: (800) 241-1044
Toll-free TTY: (800) 241-1055
Fax: (301) 770-8977
Last updated: 2014 May 5

Description:
The National Institute on Deafness and Other Communication Disorders (NIDCD) Information Clearinghouse, a service of NIDCD, is a national resource center for health information on hearing, balance, smell, taste, voice, speech, and language for health professionals, patients, and the public.

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National Temporal Bone, Hearing, and Balance Pathology Resource Registry

Director: Joseph B. Nadol, Jr., M.D.
Public Information Contact: Nicole Pelletier, Registry Coordinator
Address: Massachusetts Eye and Ear Infirmary, 243 Charles Street
Voice: (617) 573-3711
Toll-free Voice: (800) 822-1327
Toll-free TTY: (800) 439-0183
Fax: (617) 573-3838
Last updated: 2011 Jun 30

Description:
The National Temporal Bone, Hearing, and Balance Pathology Resource Registry, which is sponsored by the National Institute on Deafness and Other Communication Disorders, promotes research into hearing and balance disorders through the study of the temporal bone and related brain structures. The registry maintains a computerized database of all U.S. temporal bone collections, disseminates information on temporal bone donation, enrolls individuals with hearing/balance disorders as temporal bone donors, educates professionals about temporal bone research, and conserves at-risk collections. Free searches of the registry’s database are available to interested otopathologic researchers. A professional/consumer newsletter, brochures/pamphlets, and online publications are available.

Publications:
The Registry
Frequency: semiannual
Type: newsletter

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National Organization for Hearing Research Foundation (NOHR)

President: Geraldine Dietz Fox
Public Information Contact: Sarah Schreiner
Address: P.O. Box 421
Voice: (610) 664-3135
Fax: (610) 668-1428
Last updated: 2014 May 2

Description:
The National Organization for Hearing Research Foundation (NOHR) is a 501(c)(3) public charity whose primary objective is to fund research into the prevention, causes, treatments, and cures for hearing loss and deafness. NOHR funds grant proposals that target innovative auditory projects; proposal submissions are reviewed by members of NOHR’s Scientific Review Committee. The most important review criteria for research proposals are scientific value and potential to yield significant new insights in the field of auditory science. Regeneration of sensory hair cells of the inner ear is a research funding priority, and examinations by other scientific disciplines are encouraged. Grant application information is available upon request.

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St. Joseph Institute for the Deaf (SJI)

President: Deborah S. Wilson
Chief Operating Officer: Cindy Costello
Address: 1809 Clarkson Road
Voice: (636) 532-3211
Fax: (636) 532-4560
Last updated: 2011 Jun 30

Description:
St. Joseph Institute for the Deaf (SJI) is committed to the spiritual and emotional growth and personal development of hearing-impaired children and young adults. SJI teaches children with hearing loss to hear, speak, and read from birth to eighth grade, regardless of race, religion, gender, or finances. Programs include early intervention; toddler, preschool, and kindergarten through eighth-grade classes; I-Hear teletherapy services; evaluations; local district partnerships; and mainstream consultancy. SJI has an onsite audiology clinic in Chesterfield, Mo.

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Vestibular Disorders Association (VEDA)

Executive Director: Cynthia Ryan
Address: 5108 NE 15th Avenue
Voice: (503) 229-7705
Toll-free Voice: (800) 837-8428
Fax: (503) 229-8064
Last updated: 2014 May 5

Description:
The Vestibular Disorders Association (VEDA) is a nonprofit organization that provides information, support, and advocacy to people with vestibular disorders and the health professionals who treat them. Such disorders include labyrinthitis, benign paroxysmal positional vertigo (BPPV), Ménière’s disease, Mal de Debarquement, ototoxicity, and perilymph fistula. Frequently reported symptoms of these disorders are dizziness, unsteadiness or imbalance, vertigo, nausea, hearing loss, visual disturbances, and tinnitus. A provider directory of health care specialists, a support group directory, resource library, and more are available on our website. Membership benefits include a quarterly newsletter and access to our member support network.

Publications:
On the Level
Frequency: quarterly
Type: newsletter

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Virginia Merrill Bloedel Hearing Research Center (VMBHRC)

Director: Jay Rubinstein, M.D., Ph.D.
Business Development Manager: Carolyn Higgins
Address: University of Washington, Box 357923
Voice: (206) 685-2962
Voice: (206) 616-4105
Fax: (206) 616-1828
Last updated: 2011 Jun 30

Description:
The Virginia Merrill Bloedel Hearing Research Center (VMBHRC) at the University of Washington conducts interdisciplinary research on hearing, hearing loss, and related communication disorders. Through its diverse programs that foster national and international collaboration between top experts in the field, the center advances the fight against deafness and disequilibrium on the fronts of protection, intervention, and regeneration. The center provides invaluable support to patients, the scientific community, and the general public.

Publications:
Bloedel Sound
Frequency: annually
Type: newsletter

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