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Strengthen the Evidence for Maternal and Child Health Programs

Search Results: MCH Organizations

This list of organizations is drawn from the MCH Organizations Database. Contact information is the most recent known to the MCH Digital Library.


Displaying records 1 through 17 (17 total).

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

Annotation: The Alexander Graham Bell Association for the Deaf and Hard of Hearing is a membership-based information center on hearing loss, emphasizing the use of technology, speech, speechreading, residual hearing, and written and spoken language. AG Bell focuses specifically on children with hearing loss, providing ongoing support and advocacy for parents, professionals and other interested parties. AG Bell publishes books and brochures on the subject of hearing loss, auditory approaches in education, advocacy, employment, and advances in hearing technology. AG Bell also publishes a magazine, Volta Voices, and a scholarly journal, The Volta Review, and offers resource-referral services to individuals with questions about hearing loss and auditory approaches. AG Bell provides financial aid to qualifying applicants for mainstreamed, auditory-based education at the preschool, school-age, and university levels. Regional conferences and biennial conventions are held to educate both members and non-members on issues relating to hearing loss. AG Bell also provides governmental and education advocacy services through its state chapters, children's rights coordinators, and international affiliates.

Keywords: Deafness, Family support services, Hearing disorders, Lip reading training, Professional training

American Association of the Deaf-Blind (AADB)

Annotation: The mission of the American Association of the Deaf-Blind (AADB) is to assure that a comprehensive, coordinated system of services is accessible to all deaf-blind persons enabling them to achieve their maximum potential through increased independence, productivity and integration into the community. Services to consumers include referrals, publications, and reference information. Some materials are available in large print, Braille, and on disk (MS Word).. AADB prints a quarterly magazine, The Deaf-Blind American. The organization also sponsors conferences.

Keywords: Advocacy, Civil rights, Deafness, Disabilities, Hearing disorders, Information services, Visually impaired, Youth services

American Society for Deaf Children (ASDC)

Annotation: The American Society for Deaf Children (ASDC) provides information and support to parents and families of deaf or hearing-impaired children. The society offers assistance with educational or legal problems related to rearing a hearing-impaired child. Services are also provided to the public. Publications include a journal and a quarterly newsletter, The Endeavor. Some materials are available in Spanish, and the ASDC sponsors a biennial convention, a "First Year Free" program, and a listserv.

Keywords: Civil rights, Deafness, Disabilities, Family support services, Hearing disorders, Information services, Parent groups

American Speech-Language-Hearing Association (ASHA)

Annotation: The American Speech-Language-Hearing Association (ASHA) certifies professional speech-language pathologists and audiologists and accredits graduate school programs in these areas. The association conducts research in communication disorders and provides information and referrals to speech-language pathologists and audiologists. Publications include Journal of Speech and Hearing Research, American Journal of Audiology, American Journal of Speech-Language Pathology, Language, Speech and Hearing Services in the Schools, ASHA Leader and ASHA Magazine. Some publications are available in Spanish. ASHA also sponsors conference, training seminars and workshops.

Keywords: Communication disorders, Deafness, Hearing disorders, Language, Medical research, Speech, Speech disorders, Speech pathologists, Speech pathology, Speech therapy

Beginnings for Parents of Children who are Deaf or Hard of Hearing

Annotation: Beginnings for Parents of Children who are Deaf or Hard of Hearing serves families of children who are deaf or hard of hearing (0–21 years old) and concerned professionals. The organization provides parent support and information about hearing loss, including communication and educational options. Publications include videotapes, a parent manual, and brochures. Some materials are available in Spanish.

Keywords: Children, Deafness, Hearing disorders, Parent groups, Parent support services, Testing

DB-LINK: The National Information Clearinghouse on Children Who are Deaf-Blind

Annotation: DB-LINK: The National Information Clearinghouse on Children Who are Deaf-Blind identifies, coordinates, and disseminates information related to children and youth who have combined hearing and vision losses. DB-LINK is a collaborative effort of Helen Keller National Center, Perkins School for the Blind, and Teaching Research. DB-LINK is a co-sponsor of the publication Deaf-Blind Perspectives. Services to consumers include tailored responses to requests, referrals, and reference information. Publications include a catalog and a newsletter. Limited materials are available in Spanish.

Keywords: Blindness, Deafness, Hearing disorders

Deafness Research Foundation (DRF)

Annotation: The Deafness Research Foundation (DRF) is a national voluntary organization that provides financial support for research into the cause, treatment, and prevention of all hearing disorders. DRF has launched the National Campaign for Hearing Health, a public outreach and education, and government relations initiative to ensure that all Americans, especially children, can benefit from these research breakthoughs and enjoy lifelong hearing. DRF publishes a newsletter.

Keywords: Deafness, Financial support, Hearing disorders, Medical research, Public awareness materials

Foundation for Ichthyosis and Related Skin Types (FIRST)

Annotation: The Foundation for Ichthyosis and Related Skin Types (FIRST) is a national non-profit organization dedicated to helping individuals and familes affected by ichthyosis. Ichthyosis is a rare genetic skin disease characterized by very dry, cracked, scaling, and thickened skin. The Foundation provides support, information, education, and advocacy for its members. The Foundation supports research into causes, treatment, and cures for ichthyosis. Informational brochures and booklets are available in English and Spanish. The Foundation also publishes a newsletter and sponsors conferences.

Keywords: Ichthyosis, Chanarin-Dorfman Syndrome, Chondrodysplasia Punctata Syndromes, Colloidion baby, Darier disease, Epidermal Nevus syndrome, Epidermolytic Hyperkeratosis, Erythrokeratodermas, Keratitis-Ichthyosis-Deafness (KID) syndrome, Multiple Sulfatase Deficiency, Palmoplantar Keratoderma syndromes, Peeling skin syndrome, Pityriasis Rubra Pilaris, Refsum disease, Rud syndrome, Skin diseases, Tay Sachs disease

HEAR NOW

Annotation: HEAR NOW, the U.S. program of the Starkey Hearing Foundation, provides hearing aids to adults and children who are permanent residents of the U.S., meet the financial criteria, and are approved for assistance. [HEAR NOW is an organization of last resort; all other options for service must be used before HEAR NOW benefit is approved.] To determine if someone meets the eligibility requirements, call the organization's toll free number, 800-648-4327. HEAR NOW also collects used hearing aids for recycling. Donations are tax deductible. Hearing aids should be packed in a padded envelope or box along with the clearly printed name and address of the donor inside with the aids. Send to the above address. Acknowledement letters will be sent within six (6) weeks of receipt of donation.

Keywords: Advocacy, Deafness, Hearing disorders, Information services

Hearing Loss Association of America ( )

Annotation: The Hearing Loss Association of America (formerly Self Help for Hard of Hearing People) is a nonprofit, membership, organization of people who are deaf or hard of hearing, their families, professionals in hearing-related fields, and others who promotes the welfare and interests of people with hearing loss. Programs and services include a bimonthly journal, an annual convention, training seminars and workshops, advocacy, and information dissemination.

Keywords: Deafness, Hearing disorders, Selfhelp programs

Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC)

Annotation: The Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC) provides services to youths and adults who are deaf-blind. HKNC's training program provides evaluation, short-term comprehensive vocational rehabilition training, and assistance to consumers in obtaining employment housing and community supports. The Center also conducts professional training seminars and provides professional internships. HKNC is a partner in the National Technical Assistance Consortium and the National Information Clearinghouse of Children who are Deaf-Blind, DB-LINK. HKNC support the National Family Association for Deaf-Blind and maintains a national registry of individuals who are deaf-blind and publishes a tri-annual newsletter, Nat-Cent News.

Keywords: Adolescents, Vocational rehabilitation, Training, , Blindness, Deafness, Hearing disorders, Patient identification

John Tracy Clinic

Annotation: The John Tracy Clinic, founded in 1942, offers families with young children up to the age of six correspondence education courses to help them meet the challenges of deafness. All courses are offered in both English and Spanish. (Materials are also available in French, Asian and 25 other languages as well). The clinic sponsors conferences, training seminars and workshops and offers intensive three-week summer courses for parents, their young deaf child, and siblings from age 6-12 to show them how to communicate with their sibling. For families in the Southern California, there is a parent/infant program, a preschool, parent classes and support groups, full audiological testing and graduate education for teachers of the deaf. All services are offered without charge. The organization also publishes a bulletin.

Keywords: Advocacy, Civil rights, Deafness, Disabilities, Hearing disorders, Information services

Laurent Clerc National Deaf Education Center, Information and Resources

Annotation: The Laurent Clerc National Deaf Education Center, Information and Resources (formerly tthe Publications and Information Dissemination Office) responds to information queries from families and professionals serving deaf and hard of hearing children ages 0-21.

Keywords: Children, Deafness

National Family Association for Deaf-Blind (NFADB)

Annotation: The National Family Association for Deaf-Blind (NFADB) is an organization founded on the belief that individuals who are deaf-blind are valued members of society and are entitled to the same opportunities and choices as other members of the community. NFADB runs a large national network of families who focus on issues surrounding deaf-blindness. NFADB advocates for all persons who are deaf-blind of any chronological age and cognitive ability; supports national policy to benefit people who are deaf-blind; encourages the founding and strengthening of family organizations in each state dedicated to assisting families of persons who are deaf-blind; provides resource and referrals services; and collaborates with professionals who work with persons who are deaf-blind. Newsletters, informational webinars, family stories, news, state resources, and online parent training can be accessed from the website.

Keywords: Blindness, Deafness, Hearing disorders

National Institute on Deafness and Other Communication Disorders Information Clearinghouse (NIDCDIC)

Annotation: The National Institute on Deafness and Other Communication Disorders (NIDCD) conducts and supports biomedical and behavioral research and training on disorders of hearing, balance, smell, taste, voice, speech, and language. The NIDCD Information Clearinghouse disseminates information and resources on human communication processes. The clearinghouse operates an information service, develops and distributes materials, and maintains a computerized database. Publications include a newsletter and a catalog. Some materials are available in Spanish. The Institute also provides referrals.

Keywords: Deafness, Balance disorders, Communication disorders, Government financing, Hearing disorders, Information services, Language, Language development, Language disorders, Medical research, Medical research, Self help clearinghouses, Smell, Speech, Taste disorders, Voice disorders

Telecommunications for the Deaf (TDI)

Annotation: Established in 1968, Telecommunications for the Deaf (TDI) is a national non profit organization opening new avenues of communication for the deaf, heard-of-hearing, and speech-impaired community. Its mission is to constantly improve technology and accessibility for all who rely on visual telecommunications. In partnership with an Advisory Council representing all the national organizations of deaf, hard-of-hearing, and speech impaired consumers, TDI improves telecommunications relay systems; expands access to emergency and information services; increases the availability of television captioning and visual alerting devices; and improves real-time captioning for television programs, conferences, and meetings. TDI also works directly with the government and the telecommunications industry to access visual telecommunications needs, foster the development of advanced telecommunications devices, and improve access to new technologies and services. Services to consumers include referrals, publications, and reference information. TDI publishes a newsletter and sponsors conferences.

Keywords: Deafness, Hearing disorders, Information sources, Speech disorders, Telecommunication devices

Texas Association of Retinitis Pigmentosa (TARP)

Annotation: The Texas Association of Retinitis Pigmentosa (TARP) provides information sharing, advocacy, referral, and emotional support services for people with retinitis pigmentosa, Usher syndrome, and other progressive visual and hearing conditions. The association provides referrals and reference information to consumers. Publications include four books on RP and Usher Syndrome II by author Dorothy Stiefel. A new publication (disk/book), Dealing with the Threat of Loss, is also available.

Keywords: Retinitis pigmentosa, Advocacy, Blindness, Deafness, Information services, Support groups, Texas, Usher syndrome, Vision disorder

   

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.