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Acoustic Neuroma Association (ANA)

Executive Director: Judy B. Vitucci
Address: 600 Peachtree Parkway, Suite 108
Voice: (770) 205-8211
Toll-free Voice: (877) 200-8211
Fax: (877) 202-0239
Internet: www.ANAUSA.org
Last updated: 2011 Jun 30

Description:
The Acoustic Neuroma Association (ANA) is a patient-focused organization that provides information and support to those affected by acoustic neuroma. An acoustic neuroma, also called a vestibular schwannoma, is a slow-growing, benign tumor that develops on the eighth cranial nerve: early symptoms include hearing loss, balance problems, and tinnitus. ANA publishes a quarterly newsletter and other consumer information, organizes local support groups, promotes research, and maintains an interactive website. Also holds a national symposium; contact ANA for date and location.

Publications:
NOTES
Frequency: quarterly
Type: consumer newsletter

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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
Internet: www.entnet.org
Last updated: 2011 Jun 30

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 Otological Society (AOS)

President: Herman A. Jenkins, MD
Public Information Contact: Shirley Gossard, Administrator
Address: Administrative Office, 3096 Riverdale Road
Voice: (352) 751-0932
Fax: (352) 751-0696
Last updated: 2011 Jun 30

Description:
The American Otological Society (AOS) is a professional organization that works to advance and promote medical and surgical otology/neurotology, including the rehabilitation of individuals with hearing and balance disorders, and to encourage, promote, and sponsor research in otology/neurotology, lateral skull base surgery, and related disciplines. The educational mission of AOS is to foster dialogue and share information on advances in the understanding and management of otological and neurotologic disorders. Holds annual meeting for members; visit the AOS website for date and location. AOS also publishes peer-reviewed papers and discussions presented during the scientific program of its meeting as well as proceedings of its business meetings.

Publications:
Otology & Neurotology
Frequency: published eight times a year,
Type: professional journal

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American Tinnitus Association (ATA)

Executive Director: Michael Malusevic
Director of Public Affairs: Jennifer Born
Address: P.O. Box 5
Voice: (503) 248-9985
Voice: 800-634-8978
Toll-free Voice: (800) 634-8978
Fax: (503) 248-0024
Internet: www.ata.org
Last updated: 2011 Jun 30

Description:
The American Tinnitus Association (ATA) exists to cure tinnitus by developing resources that advance tinnitus research. Founded in 1971, ATA has raised and allocated millions of dollars toward medical research projects focused on a cure for tinnitus. ATA also advocates for effective public policies that support its mission. ATA publishes a triannual magazine in April, August, and December. The magazine includes detailed articles on current research, treatment, and other information for those living with tinnitus and others interested in staying current in this field. Articles from prior issues are available on the ATA website. A consumer directory, fact sheets, and other publications for professionals and consumers also are available online and in print.

Publications:
Tinnitus Today
Frequency: triannual
Type: journal
ATA Electronic Newsletter
Frequency: triannual
Type: newsletter

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Association of Late-Deafened Adults (ALDA)

President: Cynthia Amerman
ALDA eNews: Ken Arcia
Address: 8038 Macintosh Lane
Voice: (815) 332-1515
Toll-free Voice: (866) 402-ALDA (2532)
Toll-free TTY: (866) 402-ALDA (2532)
Internet: www.alda.org
Last updated: 2011 Jun 30

Description:
The Association of Late-Deafened Adults (ALDA) serves as a resource center providing information and referrals, self-help, and support groups for people deafened as adults. ALDA works to increase public awareness of the special needs of deafened adults. Holds annual conference; contact ALDA for date and location. A professional/consumer directory, proceedings of conventions, and fact sheets are available.

Publications:
ALDANews
Frequency: quarterly
Type: professional/consumer newsletter
ALDA eNews
Frequency: monthly, or as needed
Type: e-mail news update

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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:
Frequency:

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Genetic Alliance

President /CEO: Sharon F. Terry, M.A.
Address: 4301 Connecticut Avenue, NW, Suite 404
Voice: (202) 966-5557
Toll-free Voice: (800) 336-GENE (4363)
Fax: (202) 966-8553
Last updated: 2011 Jun 30

Description:
Genetic Alliance improves health through the authentic engagement of communities and individuals. The organization is committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. Genetic Alliance’s network includes disease-specific advocacy organizations, universities, private companies, government agencies, and public policy organizations.

Publications:
Advocacy in Genetics
Frequency: quarterly
Type: newsletter
Policy Bulletin
Frequency: weekly
Type: newsletter
Newborn Screening Newsletter
Frequency: quarterly
Type: newsletter

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House Research Institute

Chief Executive Officer: James D. Boswell
Manager of Media Relations: Kirsten A. Holguin
Address: 2100 West Third Street
Voice: (213) 483-4431
TTY: (213) 484-2642
Fax: (213) 483-8789
Internet: www.hei.org
Last updated: 2011 Jun 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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Hyperacusis Network

Publisher: Dan Malcore
Address: P.O. Box 8007
Voice: (920) 866-3377
Last updated: 2011 Jun 30

Description:
The Hyperacusis Network is an international support group established to care for individuals with collapsed tolerance to sound. The network helps educate the medical community and families about this rare auditory disorder by sharing ways to cope, providing advice on how to secure disability assistance, and reporting on current research and treatment options. Membership is free. A professional/consumer newsletter, directory, fact sheets, brochures/pamphlets, and online publications are available.

Publications:
The Hyperacusis Network
Frequency: biannual
Type: professional/consumer newsletter

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Hearing Health Foundation

Executive Director: Andrea Boidman
Associate, Development and Operations: Leticia Bido
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
Last updated: 2011 Jun 30

Description:
The Hearing Health Foundation's mission is to help individuals attain a lifetime of healthy hearing and balance through quality research, education, and advocacy. Throughout its 53-year history, the Hearing Health Foundation (formerly the Deafness Research Foundation) has awarded over 2,200 grants totaling more than $26 million to researchers exploring new avenues in hearing and balance science. Foundation-funded research has led to innovations in the diagnosis and treatment of otitis media (middle ear infections), cochlear implants, and implantable hearing aids as well as breakthroughs in molecular biology and hair cell regeneration.

Publications:
Hearing Health
Frequency: quarterly
Type: magazine
Hearing Health E-News
Frequency: monthly
Type: e-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
Project Manager: Charlotte Ball
Address: 1 Communication Avenue
Toll-free Voice: (800) 241-1044
Toll-free TTY: (800) 241-1055
Fax: (301) 770-8977
Last updated: 2011 Jun 30

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 Organization for Hearing Research Foundation (NOHR)

President: Geraldine Dietz Fox
Public Information Contact: Sarah Schreiner
Address: 225 Haverford Avenue, Suite 1
Voice: (610) 664-3135
Fax: (610) 668-1428
Last updated: 2011 Jun 30

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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Neurofibromatosis, Inc. (NF, Inc.)

President: Miguel Lessing
NF-2 Consultant: Marie Drew
Address: P.O. Box 66884
Voice: (630) 627-1115
Toll-free Voice: (800) 942-6825
Internet: www.nfinc.org
Last updated: 2011 Jun 30

Description:
Neurofibromatosis, Inc., (NF, Inc.) is a national nonprofit organization dedicated to all people affected by neurofibromatosis (NF) and other related disorders. NF, Inc., distributes materials on NF1 and NF2; promotes national, state, and local community involvement; supports research; has a governing board with NF2 representation; and provides real-time captioning at meetings. A toll-free helpline and website provide access to peer counseling and information 24 hours a day. A professional directory and professional/consumer publications are available.

Publications:
Neurofibromatosis Ink
Frequency: semiannual
Type: professional/consumer newsletter

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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
Internet: www.sjid.org
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: Lisa Haven, Ph.D.
Address: P.O. Box 13305
Voice: (503) 229-7705
Toll-free Voice: (800) 837-8428
Fax: (503) 229-8064
Last updated: 2011 Jun 30

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, 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, newsletter, short publications, books, and DVDs/videos are available, with some in Spanish.

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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