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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 Society for Deaf Children (ASDC)

Director of Advocacy: Cheri Dowling
:
Address: 800 Florida Avenue, NE, #2047
Voice: (800) 942-2732
Toll-free Voice: (800) 942-2732
TTY:
Fax: (410) 795-0965
Last updated: 2011 Jun 30

Description:
The American Society for Deaf Children (ASDC) supports and educates families of deaf and hard-of-hearing children, and advocates for high-quality programs and services. Holds convention every two years; contact ASDC for date and location. Consumer brochures and a magazine are available.

Publications:
The Endeavor
Frequency: quarterly
Type: consumer magazine

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

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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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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Better Hearing Institute (BHI)

President: Cathy Henderson Jones
Public Information Contact: Sergei Kochkin, Ph.D., Executive Director
Address: 1444 I Street, Suite 700
Voice: (202) 449-1100
Toll-free Voice: (800) EAR-WELL (327-9355)
Fax: (202) 216-9646
Last updated: 2011 Jun 30

Description:
Founded in 1973, the Better Hearing Institute (BHI) conducts research and engages in hearing health education with the goal of helping people with hearing loss benefit from proper treatment. BHI maintains a “Hearing Helpline” telephone service that provides information on hearing loss, sources of assistance, and other hearing help to callers anywhere in the United States and Canada. BHI also publishes periodic studies of the hearing-impaired population based on its survey of 80,000 households. BHI receives funding from the hearing aid industry to support its professional/consumer outreach efforts.

Publications:
MarkeTrak
Frequency: published periodically
Type: reports based on survey data
Your Guide to Better Hearing, A Guide to Your Child's Hearing Health, and Your Guide to Hearing Aids
Frequency:
Frequency:

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Birth Defect Research for Children, Inc. (BDRC)

Executive Director: Betty Mekdeci
Address: 976 Lake Baldwin Lane, Suite 104
Voice: (407) 895-0802
Last updated: 2011 Jun 30

Description:
Birth Defect Research for Children, Inc., (BDRC) provides parents and expectant parents with information about specific birth defects and their causes and treatments, support group referrals, and parent-matching services. BDRC also provides information about environmental exposures that may be associated with birth defects. To study these exposures further, BDRC sponsors the National Birth Defect Registry, an online research project that collects data on birth defects and prenatal/preconception exposures of both parents. A consumer newsletter, fact sheets, and other publications are available.

Publications:
Birth Defect News
Frequency: monthly
Type: e-mail newsletter

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Boys Town National Research Hospital (BTNRH)

Director: Patrick Brookhouser, M.D.
Public Information Contact: Mary Pat Moeller, Ph.D.
Address: 555 North 30th Street
Voice: (402) 498-6511
Voice: (402) 452-5068
TTY: (402) 498-6543
Fax: (402) 452-5027
Last updated: 2011 Jun 30

Description:
The Boys Town National Research Hospital (BTNRH) is internationally recognized for clinical service and research into the treatment of childhood deafness and communication disorders. Research is conducted in 20 state-of-the-art laboratories and represents three broad areas: neurobiological studies of hearing; hereditary communication disorders; and clinical, educational, and behavioral studies of human communication.

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Children of Deaf Adults International, Inc. (CODA)

President: Carmel Batson
National CODA Outreach Contact: Thomas Bull
Address: P.O. Box 30715
Voice: (805) 682-0997
TTY: (805) 682-0997
Last updated: 2011 Jun 30

Description:
Children of Deaf Adults International, Inc., (CODA) promotes family awareness and individual growth in hearing children of deaf parents. CODA provides educational opportunities, promotes self-help, organizes advocacy efforts, and acts as a resource for the membership and various communities. Holds annual conference; contact CODA for date and location. A professional/consumer newsletter, directory, fact sheets, brochures, and books are available.

Publications:
The CODA Connection
Frequency: quarterly
Type: newsletter

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Collaborative for Communication Access via Captioning (CCAC)

Founder and Chairperson: Lauren E. Storck, Ph.D.
Address: No mailing address
Last updated: 2011 Jun 30

Description:
The Collaborative for Communication Access via Captioning (CCAC) is a grassroots volunteer network that advocates for the universal inclusion of quality captioning (subtitles and real-time captioning). Membership forms are available on the website. CCAC collaborates with other groups and individuals to ensure that captioning becomes available in all needed places (education, employment, entertainment, transportation, government, telecommunications, the Internet, social participation, etc.). Members use an active online forum to request and provide guidance to facilitate inclusion of captioning whenever possible. CCAC members also offer local education and awareness workshops, conference presentations, and articles. Consumer members are eligible to request free captioning services from provider members in selected situations.

Publications:
CCAC website articles
Frequency:
CCAC Blog

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Gallaudet University (GU) and Laurent Clerc National Deaf Education Center

President: Dr. T. Alan Hurwitz
Executive Director, Communications and Public Relations: Catherine Murphy
Address: 800 Florida Avenue, NE
Voice: (202) 651-5000
Toll-free Voice: (800) 995-0550
TTY: (202) 651-5000
TTY: (202) 651-5866 (videophone)
Fax: (202) 651-5508
Last updated: 2011 Jun 30

Description:
Gallaudet University is the world’s only university in which all programs and services are specifically designed to accommodate deaf and hard-of-hearing students. The Laurent Clerc National Deaf Education Center ensures that the diverse population of deaf and hard-of-hearing students (birth through age 21) in the nation are educated and empowered and have the linguistic competence to maximize their potential as productive and contributing members of society. The Research Institute is a leading center for research on deafness. National and international programs, including regional extension centers, conferences, sign language classes, summer programs, and international outreach, annually serve approximately 33,000 people.

Publications:
Gallaudet Today
Frequency: quarterly
Type: magazine/newsletter combination
On the Green
Frequency: biweekly
Type: newsletter

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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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Hard of Hearing Advocates (HOHA)

Director: Janet Keeler
Address: P.O. Box 1184 or 245 Prospect Street
Voice: (508) 875-8662
Last updated: 2011 Jun 30

Description:
The goal of Hard of Hearing Advocates (HOHA) is to create and implement programs and solutions in areas in which people who are hard-of-hearing have undue problems. HOHA identifies specific problem areas, develops solutions, and seeks support to implement these solutions. The HOHA website has an online discussion board where hard-of-hearing people can discuss problems, solutions, and issues related to hearing loss.

Publications:
Hearing Awareness Kit
Frequency:

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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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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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Hearing Loss Association of America

Executive Director: Brenda Battat, M.A.
Address: 7910 Woodmont Avenue, Suite 1200
Voice: (301) 657-2248
TTY: (301) 657-2249
Fax: (301) 913-9413
Last updated: 2011 Jun 30

Description:
The Hearing Loss Association of America (HLAA) is a nonprofit organization with a mission to open the world of communication to people with hearing loss through education, information, support, and advocacy. HLAA provides assistance and resources for people with hearing loss and their families to learn how to adjust to living with hearing loss. HLAA is working to eradicate the stigma associated with hearing loss and raise public awareness about the need for prevention and the importance of regular hearing screenings throughout life. Its national support network includes an office in the District of Columbia area, 14 state organizations, and 200 local chapters. HLAA also holds annual conventions for people with hearing loss and professionals; see website for details.

Publications:
Hearing Loss Magazine
Frequency: bimonthly
Type: magazine

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John Tracy Clinic

President: Barbara F. Hecht, Ph.D.
Address: 806 West Adams Boulevard
Voice: (213) 748-5481
Toll-free Voice: (800) 522-4582
TTY: (213) 747-2924
Fax: (213) 749-1651
Internet: www.jtc.org
Last updated: 2011 Jun 30

Description:
The John Tracy Clinic provides free services to parents of children, ages birth to 5 years, with hearing loss. The clinic has more than 60 years of experience in early intervention and the spoken language option. Correspondence courses are available worldwide. Three-week summer sessions are offered. A master’s and credential program in teacher education is offered both onsite and online. A professional/consumer newsletter and fact sheets, brochures/ pamphlets, and online publications are available. Most materials are available in Spanish.

Publications:
John Tracy Clinic Bulletin
Frequency: semiannual
Type: newsletter

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National Board for Certification in Hearing Instrument Sciences (NBC-HIS)

Executive Director: Linda K. Jackson
Executive Assistant: Carolyne Pope
Address: 16880 Middlebelt Road, Suite 3
Voice: (734) 522-2900
Fax: (734) 522-0900
Internet: www.nbc-his.com
Last updated: 2011 Jun 30

Description:
The National Board for Certification in Hearing Instrument Sciences (NBC-HIS) is an independent, nonprofit corporation established to develop and promulgate eligibility standards for certification; to develop, process, administer, and score certification examinations based on research; and to award board certification to successful applicants. A professional directory, fact sheets, and online publications are available.

Publications:
Hear & Now
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 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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National Organization for Rare Disorders (NORD)

President/CEO: Peter L. Saltonstall
Vice President, Information Services: Mary Dunkle, Vice President for Communications
Address: P.O. Box 1968, 55 Kenosia Avenue
Voice: (203) 744-0100
Toll-free Voice: (800) 999-6673
TTY: (203) 797-9590
Fax: (203) 798-2291
Last updated: 2011 Jun 30

Description:
The National Organization for Rare Disorders (NORD) is a nonprofit voluntary health agency that serves as a clearinghouse for information on rare disorders. A rare disorder is a disease or condition that affects fewer than 200,000 Americans. Cumulatively, there are more than 6,000 rare diseases affecting more than 25 million Americans. NORD is committed to the identification, treatment, and cure of rare diseases through education, advocacy, research, and service programs. NORD administers medication assistance programs for certain rare-disease drugs as well as research grants and fellowships.

Publications:
NORD Resource Guide
Frequency: every two years
Type: resource guide
Orphan Disease Update
Frequency: biannual
Type: newsletter
Physician’s Guides
Frequency:

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Office of Special Education Programs (OSEP), Office of Special Education and Rehabilitative Services (OSERS)

Acting Director/Official Deputy: Patricia J. Guard
Address: U.S. Department of Education, 550 12th Street, SW, Room 4109
Voice: (202) 245-7459
Fax: (202) 245-7616
Last updated: 2011 Jun 30

Description:
The Office of Special Education Programs (OSEP), an office within the U.S. Department of Education, is dedicated to improving results for infants, toddlers, children, and youth with disabilities—including communication disorders—from birth through age 21 and providing leadership and financial support to assist states and local districts. OSEP awards formula grants to states as well as discretionary grants to institutions of higher education and other nonprofit organizations to support research, demonstrations, technical assistance and dissemination, technology and personnel development, and parent-training and information centers. Professional and consumer publications are available.

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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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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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