Skip to main content
Skip to main content

Directory of Organizations

New Search

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:

seperator

Top

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

seperator

Top

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.

seperator

Top

CHERAB Foundation

Founder: Lisa Geng
Address: P.O. Box 8524
Voice: (772) 335-5135
Last updated: 2011 Jun 30

Description:
The CHERAB Foundation (CHERAB) is a worldwide nonprofit organization that helps individuals with speech and language delays and disorders through communication help, education, and research that is apraxia-based. Its area of emphasis is verbal and oral apraxia, which are severe neurologically based speech and language disorders that hinder children's ability to speak. The foundation is committed to assisting with the development of new therapeutic approaches to, and prevention and cure of, neurologically based speech disorders. CHERAB brings together parents and medical, research, and educational professionals to help give a voice to all. Sign up to receive updates at http://twitter.com/TheLateTalker.

Frequency:

seperator

Top

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

seperator

Top

Dysphagia Research Society

President: Rosemary Martino, Ph.D., M.Sc., M.A. (until June 30, 2012)
Association Manager: Angela Davis, C.A.E.
Address: 4550 Post Oak Place, Suite 342
Voice: (713) 965-0566
Fax: (713) 960-0488
Last updated: 2011 Jun 30

Description:
The Dysphagia Research Society (DRS) was established to serve researchers and clinicians from different areas of inquiry who share a research interest in normal and disordered swallowing and related functions. Its purposes are to enhance and encourage research in these areas, attract new investigators to the field and encourage interdisciplinary research, promote the dissemination of knowledge, provide a multidisciplinary forum for presenting research, and foster new methodologies and instrumentation in dysphagia research and its clinical applications. DRS holds an annual conference; see website for details. DRS also publishes a professional journal and a newsletter biannually.

Publications:
Dysphagia
Frequency: quarterly
Type: journal
Frequency:
Frequency:

seperator

Top

Gallaudet University, Laurent Clerc National Deaf Education Center, Public Relations and Publications

Director of Public Relations and Publications: Danielle Puzio
Information Services Coordinator: Anita Gilbert
Address: 800 Florida Avenue, NE
Voice: (202) 651-5051
TTY: (202) 651-5051
Fax: (202) 651-5708
Last updated: 2011 Jun 30

Description:
The Public Relations and Publications Office at Gallaudet University’s (GU’s) Laurent Clerc National Deaf Education Center provides information about diverse topics related to deaf and hard-of-hearing children and young adults from infancy to age 21. The office responds to inquiries and also collaborates with authors from within the Gallaudet community and nationwide to design, produce, and disseminate books, videotapes, periodicals, and other information related to deaf and hard-of-hearing children, their families, and the professionals who serve them. Fact sheets, brochures, and a directory are available.

Frequency:
Odyssey
Frequency: semiannual
Type: magazine
World Around You
Frequency: monthly
Type: online magazine for deaf and hard-of-hearing teens

seperator

Top

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

seperator

Top

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.

seperator

Top

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

seperator

Top

Monell Chemical Senses Center

Director/President: Gary K. Beauchamp, Ph.D.
Public Information Contact: Leslie Stein, Ph.D.
Address: 3500 Market Street
Voice: (267) 519-4700
Fax: (215) 573-0909
Internet: www.monell.org
Last updated: 2011 Jun 30

Description:
The Monell Chemical Senses Center (Monell) is the world’s only nonprofit basic research institute devoted to the study of taste, smell, and chemical irritation. Its mission is to advance knowledge of the mechanisms and functions of the chemical senses to benefit human health and well-being. Monell’s interdisciplinary research relates to significant public health and quality-of-life issues across the lifespan, including obesity, diabetes, hypertension, pediatric health, occupational safety, and environmental issues. It has an education and training program for postdoctoral scientists, senior scientists, and graduate students. Monell is a resource for information about the chemical senses for the public, medical professionals, the media, and academics. A newsletter is available.

Publications:
The Monell Connection
Frequency: semiannual
Type: newsletter

seperator

Top

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

seperator

Top

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.

seperator

Top

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:

seperator

Top

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

seperator

Top

National Institute on Disability and Rehabilitation Research, Office of Special Education and Rehabilitative Services (OSERS)

Acting Director: Ruth Brannon
Address: 550 12th Street, SW, Room 6056
Voice: (202) 245-7640
Fax: (202) 245-7630
Last updated: 2011 Jun 30

Description:
The National Institute on Disability and Rehabilitation Research (NIDRR) is part of the Office of Special Education and Rehabilitative Services (OSERS), U.S. Department of Education. NIDRR supports a comprehensive program of national and international research into all aspects of the rehabilitation of people with disabilities and their successful integration into education, work, and community life. Grants are awarded to institutions of higher education and qualified organizations; the fellowship program provides grants to individuals with advanced rehabilitation credentials. NIDRR administers the Interagency Committee on Disability Research. An online directory of projects and publications is available.

seperator

Top

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.

seperator

Top

Stuttering Foundation of America (SFA)

President: Jane Fraser
Public Information Contact: Joan Warner, Coordinator
Address: 1805 Moriah Woods Boulevard, Suite 3
Voice: (901) 761-0343
Toll-free Voice: (800) 992-9392
Fax: (901) 761-0484
Last updated: 2011 Jun 30

Description:
The Stuttering Foundation (SFA) provides resources, services, and support to individuals who stutter, their families, and professionals who serve them. SFA offers comprehensive, up-to-date information on stuttering through its publications, workshops, and conferences. In addition, SFA supports research into the causes of stuttering. The foundation’s worldwide referral list provides names of speechlanguage pathologists who specialize in stuttering treatment. SFA sponsors the annual National Stuttering Awareness Week the second week of May and supports International Stuttering Awareness Day, October 22. Many materials are free online and available in Spanish, French, and other languages. SFA also provides information through its Spanish-language website, www.tartamudez.org.

Publications:
Stuttering Foundation News
Frequency: quarterly
Type: newsletter
Stuttering Foundation Resource Guide
Frequency: updated bi-annually
Type: Resource guide for help on stuttering
eNews
Frequency: monthly
Type: Updates on research

seperator

Top

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

seperator

Top

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

seperator

Top