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American Academy of Facial Plastic and Reconstructive Surgery, Inc. (AAFPRS)

Executive Vice President: Stephen Duffy
Public Information Contact: Rita Chua Magness, Director of Publications and Marketing
Address: 310 South Henry Street
Voice: (703) 299-9291
Fax: (703) 299-8898
Last updated: 2011 Jun 30

Description:
The American Academy of Facial Plastic and Reconstructive Surgery, Inc., (AAFPRS) is the largest association of facial plastic and reconstructive surgeons in the world. The academy’s bylaws provide that AAFPRS fellows be board-certified surgeons with training and experience in facial plastic surgery as well as fellows of the American College of Surgeons or the Royal College of Surgeons. The AAFPRS website provides visitors with information about facial plastic surgery and the names of AAFPRS fellows in their area. Professional and consumer publications are available, with some in Spanish.

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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 Auditory Society (AAS)

President: Timothy Trine, Ph.D.
Executive Director: Darla M. Eastlack
Address: 19 Mantua Road
Voice: (856) 423-3118
Fax: (856) 423-3420
Last updated: 2011 Jun 30

Description:
The purpose of the American Auditory Society (AAS) is to increase knowledge and understanding of the ear, hearing, and balance; their disorders and how to prevent them; and habilitation and rehabilitation of individuals with hearing and balance dysfunction. AAS coordinates and disseminates information, particularly through regular meetings, sponsorships, and publication of a professional journal and newsletter and other informational materials. Holds annual meeting; contact AAS for date and location.

Frequency:
Ear & Hearing
Frequency: bimonthly
Type: professional journal

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American Laryngological Association (ALA)

President: Marvin P. Fried, M.D.
Administrator: Maxine Cunningham
Address: P.O. Box 128186
Voice: (615) 343-0429
Voice: (615) 812-6170
Fax: (615) 322-9102
Last updated: 2011 Jun 30

Description:
The mission of the American Laryngological Association (ALA) is to promote education and research and to disseminate important new scientific information relative to laryngology, which is the study of basic science, evaluation, and management of disorders relating to the larynx. ALA strives to accomplish this mission by promoting and presenting the latest scientific discoveries, publishing peer-reviewed reports, establishing funding sources for pilot research studies that facilitate subsequent funding by the National Institutes of Health, and sponsoring educational seminars and courses as well as public service announcements.

Publications:
The Laryngoscope
Frequency: monthly
Type: professional 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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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
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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Autism Speaks

President: Liz Feld
Executive Vice President, Programs and Services: Peter Bell
Address: 1 E. 33rd Street, 4th Floor
Voice: (212) 252-8584
Voice: (609) 228-7346
Fax: (212) 252-8676
Last updated: 2014 May 2

Description:
The goal of Autism Speaks is to change the future for all who struggle with autism spectrum disorders. This organization is dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; raising public awareness about autism and its effects on individuals, families, and society; and bringing hope to all who deal with the hardships of autism.

Publications:
e-Speaks
Frequency: weekly
Type: newsletter
Speaking Out
Frequency: quarterly
Type: newsletter

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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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Center for Hearing and Communication

Executive Director: Laurie Hanin, Ph.D.
Director, Audiology Services: Ellen Lafargue
Director, Communication Services: Lois Kam Heymann
Address: 50 Broadway
Voice: (917) 305-7700
TTY: (917) 305-7999
Fax: (917) 305-7888
Last updated: 2011 Jun 30

Description:
The nonprofit Center for Hearing and Communication works to improve the quality of life for people with all degrees of hearing loss and to offer comprehensive services regardless of age or mode of communication. State-of-the-art services include hearing assessment, hearing aid fitting and dispensing, speech-language and auditory evaluation and therapy, otology, cochlear implant evaluation and training, assistive listening devices and FM system counseling, tinnitus and hyperacusis therapy, and evaluation/treatment of children with auditory processing disorder (APD) and other listening challenges. Holds quarterly cochlear implant support group, weekly group assistive device demonstrations, and other meetings. Print and online publications are available.

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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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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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The Hyperacusis Network

Publisher: Dan Malcore
Address: 4417 Anapaula Lane
Voice: (920) 866-3377
Last updated: 2014 Apr 30

Description:
The Hyperacusis Network is an international support group established to care for individuals with a decreased sound tolerance (DST). The network helps educate individuals, families, and the medical community and families about this rare auditory disorder by explaining treatment options, sharing ways to cope, and reporting on current ongoing research. In addition, the network provides a listing of clinicians worldwide who are specifically trained to diagnose and treat hyperacusis. A message board is provided so individuals can share their experiences. The network also offers hearing protection products designed specifically for hyperacusis. Fact sheets, brochures/pamphlets, online publications and resources are available through our website. Membership is free.

Publications:
The Hyperacusis Network
Frequency: biannual
Type: professional/consumer 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:
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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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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
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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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 Center for Voice and Speech (NCVS)

Director: Ingo Titze, Ph.D.
Public Information Contact: Eric Hunter
Address: University of Utah, Vice President for Research, 201 Presidents Circle Room 210
Voice: (801) 596-2012
Fax: (801) 585-6212
Last updated: 2014 Apr 25

Description:
The National Center for Voice and Speech (NCVS) is an interdisciplinary team of investigators and health care professionals dedicated to vocology, which deals with the powers, limitations, and enhancement of voice and speech. A primary outreach of NCVS is the Summer Vocology Institute, which provides background in vocology and related topics as well as real-world experience in applying those concepts in laboratory, performance, and health services settings. NCVS is headquartered at the University of Utah, under its Vice President for Research, with active associates in several universities across the country. Professional/consumer publications are available, with some materials in Spanish and French.

Publications:
Vocal Vibrations
Frequency: semiannual
Type: newsletter

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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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National Stuttering Association (NSA)

Executive Director: Tammy Flores
Address: 119 West 40th Street, 14th Floor
Voice: (212) 944-4050
Toll-free Voice: (800) 937-8888
Fax: (212) 944-8244
Last updated: 2014 May 5

Description:
The National Stuttering Association (NSA) is a national network of support groups created to meet the needs of children and adults who stutter. NSA offers information and support, provides referrals to specialists, serves as an advocate for the stuttering community, and raises the consciousness of the general public about the disorder. Holds annual convention; contact NSA for date and location. Professional and consumer fact sheets, brochures/pamphlets, and books are available.

Publications:
Family Voices
Frequency: quarterly newsletter
Type: by and for children, teens, parents, speech-language pathologists, and others who support individuals who stutter
Letting Go
Frequency: quarterly newsletter
Type: about stuttering research, therapy options, and coping strategies

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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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Recurrent Respiratory Papillomatosis Foundation (RRPF)

Director: Bill Stern
Address: P.O. Box 6643
Voice: (609) 530-1443
Fax: (866) 498-7559
Last updated: 2011 Jun 30

Description:
The Recurrent Respiratory Papillomatosis Foundation (RRPF) was created to provide family support; promote public awareness; and aid in the prevention, cure, and treatment of recurrent respiratory papillomatosis (RRP), a rare disease that affects the voice. The most common symptoms of RRP are a hoarse or strained voice, dysphonia (difficulty in speaking), or aphonia (loss of voice). The organization focuses primarily on networking within the RRP community, including patients, families, medical practitioners, and researchers. Its goal is to stimulate more RRP-related research that may lead to more effective treatments and, ultimately, a cure for this disease. Professional/consumer brochures/pamphlets are available.

Publications:
RRP Medical Reference Service
Frequency: annually produced
Type: listing of current references/abstracts
RRP Newsletter
Frequency: published annually
Type: other

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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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