Clinical Organizations
General and Other
Genetic Resources
Newborn Screening
Support Groups

Clinical Organizations:

» American Academy of Otolaryngology Head and Neck Surgery - Click on the “Public and Parents”, and then on “ENT Health Info” to view information on ear infections, ear function, plastic surgery of the ear, cochlear implants and other links.

http://www.entnet.org

» American Academy of Pediatrics – Click on the “You and Your Family” link for educational resources for parents covering advocacy, research, and other literature.

http://www.aap.org

» American Speech-Language Hearing Association – A useful resource for both professionals and parents.  Gives information on hearing, hearing screening, rehabilitation, and balance.  It also lists useful links to other organizations and associations.

http://www.asha.org

General and Other:

» Baby Hearing - This website has information for parents about causes of hearing loss, cochlear implants, hearing aids, newborn screening, and early intervention.

http://www.babyhearing.org

» Boys Town National Research Hospital - This website of the Boys Town National Research Hospital (Omaha, Nebraska) is an institution recognized for its research and treatment of children with deafness and communication disorders.  The website contains information on newborn hearing screening, hearing testing, high risk factors for hearing loss, hearing aids and genetic information on hearing loss.

http://www.boystownhospital.org

» Gallaudet University - The world's only liberal arts university for deaf and hard of hearing students.

http://www.gallaudet.edu

» NIDCD - The branch of the National Institutes of Health that supports research on deafness and communication disorders.  This link provides information on causes of hearing loss, disorders associated with hearing loss, cochlear implants, ear infections, hearing aids, American Sign Language, noise-induced hearing loss, tinnitus, as well as resources for educators.

http://www.nidcd.nih.gov

» NIDCD Temporal Bone Registry - This website serves as a registry for individuals with ear disorders who wish to pledge their temporal bones at death to scientific research. The registry is based at the Massachusetts Eye and Ear Infirmary (Boston, Massachusetts) and the website is maintained by the National Institute on Deafness and other Communication Disorders.

http://www.tbregistry.org

 

» Parents Guide to Hearing Loss - A booklet for parents developed by Utah Department of Health, Hearing, Speech & Vision services. This booklet provides information on communication with your child, hearing tests, hearing devices, as well as programs for children with hearing loss.

 

http://medhome.med.utah.edu/file.cfm?file_id=190&

 

» Raising Deaf Kids - This website is maintained by The Children’s Hospital of Philadelphia.  It includes information on newborn screening, early intervention, school choices, and technology for individuals with hearing loss.

http://www.raisingdeafkids.org

Genetic Resources:

» The Morton Hearing Research Group - This website is maintained by Cynthia Morton’s laboratory at Brigham and Women's Hospital and contains useful resources for the research community.  It includes a human cochlear cDNA library, as well as links to other basic science websites.

http://hearing.bwh.harvard.edu

» Hereditary Hearing Loss Homepage - This website is a useful resource for researchers.  It has up-to-date information on known gene localizations for genetic hearing loss and the responsible genes identified.  A subset of the syndromic causes of hearing loss are also covered. 

http://www.uia.ac.be/dnalab/hhh

» The Connexin-Deafness Homepage - This website maintains a database of all mutations discovered in the connexin genes responsible for hearing loss.

http://www.crg.es/deafness

» Boys Town National Research Hospital - This website of the Boys Town National Research Hospital (Omaha, Nebraska) is an institution recognized for its research and treatment of children with deafness and communication disorders.  The website contains information on newborn hearing screening, hearing testing, high risk factors for hearing loss, hearing aids and genetic information on hearing loss.

http://www.boystownhospital.org

» Gene Tests Gene Clinics- This website is a publicly funded medical genetics resource developed for physicians, healthcare providers and researchers.  It offers genetics laboratory directory, a genetics clinics directory, and information on genetics and genetic testing concepts. It is a useful resource for obtaining information on genetic diseases and the availability of genetic tests for them.  The gene clinics section contains clinical information related to the diagnosis, management, and genetic counseling of individuals and families with specific inherited disorders.

http://www.genetests.org

» Harvard Medical School Center for Hereditary Deafness – This website contains information on the genetics of hearing loss including information on genetic testing. It also contains a database of genetic mutations known to cause hearing loss.  The booklet “Understanding the Genetics of Deafness” can be requested from this website.

 

http://hearing.harvard.edu

 

Newborn Screening:

» National Center for Hearing Assessment Management –A wealth of information about newborn hearing screening including legislative activities, program information, screening, statistics, etc.

http://www.infanthearing.org

» Kansas' Sound Beginnings Newborn Hearing Screening Program - This website has information on hearing screening and risks for hearing loss.  The program’s aim is to get appropriate intervention for identifying newborns as soon as possible.  Educational brochures are available here.

http://www.kdhe.state.ks.us/sb/index.html

Support Groups:

» AG Bell Association for the Deaf and Hard of Hearing – The largest membership organization promoting the use of spoken language by children and adults with hearing loss.  This website offers a number of well-updated informational resources on advocacy, financial aid, scholarships, publications and numerous programs and services.

http://www.agbell.org/about.cfm

» Self Help for the Hard of Hearing - This website is maintained by Self Help for the Hard of Hearing (SHHH), a nonprofit educational organization committed to the well-being of the hard of hearing population. SHHH offers information on technology for people hard of hearing, clinical links, organizations and facts on hearing loss.

http://www.shhh.org

» National Association of the Deaf – This is the oldest and largest constituency organization safeguarding the accessibility and civil rights of deaf and hard of hearing Americans in education, employment, health care, and telecommunications.  The website provides information on news and advocacy for people with hearing loss.

http://www.nad.org

» American Society for Deaf Children - a parent-helping-parent, non-profit organization whose purpose is providing support, encouragement, and information to families raising children who are deaf or hard of hearing.  This website also offers information on communication access, particularly through the competent use of sign language, in homes, schools, and communities.

http://www.deafchildren.org