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

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

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

Childhood Apraxia of Speech Association of North America (CASANA)

President: Mary Sturm, M.D.
Public Information Contact: Sharon Gretz, M.Ed.
Address: 416 Lincoln Avenue, 2nd Floor
Voice: (412) 343-7102
Last updated: 2014 May 5

Description:
The Childhood Apraxia of Speech Association of North America (CASANA) is the only national nonprofit 501(c)(3) charity representing the needs of children with apraxia and their families. CASANA’s goal is to provide credible, reliable, and comprehensive information on apraxia of speech in children. Guided by a professional advisory board of experts in childhood apraxia of speech, CASANA offers information and resources based on the current prevailing professional literature and expert opinion. CASANA programs include: - Information, support, and awareness: online support and information, multimedia, awareness walks, iPads for Apraxia project, CASANA speech therapy funds - Education and Training: workshops, webinars, an annual national conference, and intensive training institutes - Research Support: connects families with researchers; funds research, hosts research symposiums

Publications:
Apraxia-KIDS Newsletter
Type:

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

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

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
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

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

seperator

Top

National AMBUCS, Inc.

Executive Director: Joseph Copeland
Address: P.O. Box 5127
Voice: (336) 852-0052
Fax: (336) 852-6830
Last updated: 2011 Jun 30

Description:
The mission of National AMBUCS, Inc., is to create mobility and independence for people with disabilities. AMBUCS members are committed to performing valuable civic service and improving their communities. Some of our programs include home ramp building for people in wheel chairs and the funding of college scholarships for therapists. One of our most successful programs in recent years has been the distribution of the AmTryke® therapeutic tricycle.

Publications:
AMBUCS Leader
Frequency: monthly
Type: newsletter
AMBUCS Magazine
Frequency: quarterly
Type: magazine
AmTryke Catalog
Frequency: bi-annually
Type: magazine

seperator

Top

National Dissemination Center for Children with Disabilities (NICHCY)

Director: Elaine M. Mulligan
Address: 1825 Connecticut Avenue, NW
Voice: (202) 884-8200
Toll-free Voice: (800) 695-0285
TTY: (202) 884-8200
Toll-free TTY: (800) 695-0285
Fax: (202) 884-8441
Last updated: 2014 May 5

Description:
The National Dissemination Center for Children with Disabilities (NICHCY) is a national information and referral center that provides information on disabilities and disability-related issues to families, educators, and other professionals. With a special focus on children and young adults ages birth to 22, NICHCY answers questions in both English and Spanish. Fact sheets on specific disabilities, state resource sheets, and information about the Individuals with Disabilities Education Act are available. All NICHCY publications are available online at nichcy.org/publications.

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 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:

seperator

Top

National Spasmodic Dysphonia Association, Inc. (NSDA)

Executive Director: Kimberly A. Kuman
Address: 300 Park Boulevard, Suite 415
Voice: (630) 250-4504
Toll-free Voice: (800) 795-NSDA (6732)
Fax: (630) 250-4505
Last updated: 2011 Jun 30

Description:
The National Spasmodic Dysphonia Association (NSDA) is a nonprofit 501(c)(3) organization dedicated to advancing medical research into the causes of and treatments for spasmodic dysphonia; promoting physician and public awareness of the disorder through outreach; and sponsoring support activities for people with spasmodic dysphonia and their families through educational materials, annual symposiums, support groups, and online resources. NSDA is the only organization that is dedicated solely to spasmodic dysphonia.

Publications:
Our Voice
Frequency: semiannual
Type: newsletter
Understanding Spasmodic Dysphonia
Frequency:
What Is Spasmodic Dysphonia?
Frequency:

seperator

Top

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

seperator

Top

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

seperator

Top

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

seperator

Top