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American Otological Society (AOS)

President: John W. House, M.D.
Public Information Contact: Kristen Bordignon, Administrator
Address: Administrative Office, 1980 Warson Rd
Voice: (217) 638-0801
Fax: (217) 679-1677
Last updated: 2014 May 5

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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Association of Late-Deafened Adults (ALDA)

President: Mary Lou Mistretta
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)
Last updated: 2014 Apr 29

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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Audiology and Speech Pathology Services, U.S. Department of Veterans Affairs (VA)

Director: Lucille B. Beck, Ph.D.
Public Information Contact: Cathy Greener
Address: VA Medical Center, 50 Irving Street, NW
Voice: (202) 745-8578
Voice: (202) 745-8270
Fax: (202) 745-8579
Last updated: 2014 Apr 29

Description:
Audiology and Speech Pathology Services of the U.S. Department of Veterans Affairs (VA) provides high-quality, comprehensive, state-of-the-art clinical services to eligible veterans. Diagnostic and treatment services are offered in a timely manner and in an environment that fosters respect, communication, and compassion. Audiology services include evaluation and treatment of hearing loss and tinnitus, along with assessment of balance problems and, in some locations, balance rehabilitation. Diagnostic auditory and vestibular assessment, provision of hearing aids and assistive and alerting devices, cochlear implant management, and auditory rehabilitation also are available. Speech pathology services include evaluation and treatment of speech, language, voice, and swallowing disorders.

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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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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: John K. Arch, FACHE
Public Information Contact: Mary Pat Moeller, Ph.D.
Address: 555 North 30th Street
Voice: (402) 452-5033
Voice: (402) 452-5068
TTY: (402) 498-6543
Fax: (402) 452-5027
Last updated: 2014 Apr 29

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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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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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 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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National Organization for Rare Disorders (NORD)

President/CEO: Peter L. Saltonstall
Vice President, Information Services: Mary Dunkle, Vice President for Communications
Address: 55 Kenosia Avenue
Voice: (203) 744-0100
Toll-free Voice: (800) 999-6673
TTY: (203) 797-9590
Fax: (203) 798-2291
Last updated: 2014 May 1

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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Neurofibromatosis Network

President: Cheri Stewart
Address: 213 Wheaton Avenue
Voice: (630) 510-1115
Last updated: 2014 May 5

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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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
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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United States Society for Augmentative and Alternative Communication (USSAAC)

President: Chris Klein
Public Information Contact: Barbara Figueiredo, USSAAC Office Manager
Address: 34 Market Street
Voice: (928) 585-8525
Fax: (410) 296-5710
Last updated: 2014 May 2

Description:
The purposes of the United States Society for Augmentative and Alternative Communication (USSAAC) are to enhance the communication effectiveness of people who can benefit from augmentative and alternative communication and to support the goals of the International Society for Augmentative and Alternative Communication. USSAAC supports individuals in their right to communicate and participate fully in society; promotes public awareness; influences national and state public policy and legislation; disseminates legislative, regulatory, and funding information; facilitates high-quality service delivery; and promotes transdisciplinary professional education. Sponsors a conference every two years; visit the USSAAC website for date and location.

Publications:
SpeakUp
Frequency: triannual
Type: magazine

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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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