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Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell)

Chief Executive Officer: Emilio Alonso-Mendoza, J.D., CFRE
Director of Communications and Marketing: Susan Boswell
Address: 3417 Volta Place, NW
Voice: (202) 337-5220
Toll-free Voice: (866) 337-5220
TTY: (202) 337-5221
Fax: (202) 337-8314
Last updated: 2014 Apr 4

Description:
The Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell) helps families, health care providers, and education professionals understand childhood hearing loss and the importance of early diagnosis and intervention. Through advocacy, education, research, and financial aid, AG Bell helps to ensure that every child and adult with hearing loss has the opportunity to listen, talk, and thrive. With chapters located throughout the United States and a network of international affiliates, AG Bell supports its mission: advocating independence through listening and talking!

Publications:
AG Bell Update
Frequency: weekly
Type: e-newsletter
The Volta Review
Frequency: biannual
Type: professional journal
Volta Voices
Frequency: bimonthly
Type: magazine

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American Association of the Deaf-Blind (AADB)

Address: P.O. Box 2831
Voice: (301) 495-4403
Fax: (301) 495-4404
Last updated: 2014 May 5

Description:
The American Association of the Deaf-Blind (AADB) is a national consumer organization of, for, and by people who have dual hearing and vision loss. The mission of AADB is to ensure that all deaf-blind persons achieve their maximum potential through increased independence, productivity, and integration into the community.

Publications:
AADB E-News
Frequency: free
Type: e-newsletter for the public
The Deaf-Blind American
Frequency: quarterly magazine
Type: for members, available in large print and Braille, on disk, and by e-mail

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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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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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DB-LINK at the National Consortium on Deaf-Blindness (formerly the National Information Clearinghouse on Children Who Are Deaf-Blind)

Associate Director, NCDB: John Reiman, Ph.D.
Address: 345 North Monmouth Avenue
Toll-free Voice: (800) 438-9376
Toll-free TTY: (800) 854-7013
Fax: (503) 838-8150
Last updated: 2011 Jun 30

Description:
DB-LINK, part of the National Consortium on Deaf-Blindness (NCDB), is home to the largest collection of information related to deaf-blindness worldwide. A team of information specialists makes this extensive resource available in response to direct requests and via the website. Contact DB-LINK to access quality information about deaf-blindness, order a newsletter and other publications, find resources by state, receive tailored information packets to support teaching or training, and connect to a network of experts and families. Information is free. NCDB is funded by the U.S. Department of Education’s Office of Special Education Programs.

Publications:
Deaf-Blind Perspectives
Frequency: semiannual
Type: consumer/professional newsletter

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Foundation Fighting Blindness, Inc. (FFB)

Chief Executive Officer: William T. Schmidt
Constituent Service Coordinator: Mitsy Palmer
Address: 11435 Cronhill Drive
Voice: (410) 568-0150
Toll-free Voice: (800) 683-5555
Toll-free TTY: (800) 683-5551
Fax: (410) 363-2393
Last updated: 2011 Jun 30

Description:
The mission of the Foundation Fighting Blindness, Inc., (FFB) is to drive the research that will provide preventions, treatments, and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome, and the entire spectrum of retinal degenerative diseases. FFB offers its information and referral services to affected individuals and their families as well as to doctors and eye care professionals. FFB also provides comprehensive information kits on retinitis pigmentosa, macular degeneration, and Usher syndrome. Holds a national conference approximately yearly: contact FFB for details. Publications feature articles on coping, research updates, and foundation news.

Publications:
InFocus
Frequency: triannual
Type: newsletter
InSight
Frequency: published about five times a year
Type: e-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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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.

Frequency:
Frequency:
Frequency:

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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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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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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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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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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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