Resources for Families

 

 

Reading/Booklets

 

Click on the booklets below to download and read.

 

Online Resources

 

Click on the links below for resources by category.

 

Clinical Organizations

Genetic Resources

  • HMS Laboratory for Molecular Medicine: Genetic testing for hearing loss is available at the HMSCHD affiliated clinical lab. Click here for more information.

  • 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://www.brighamandwomens.org/research/labs/bwh_hearing/.

  • 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. https://www.genetests.org/.

Education & Treatment

  • Boys Town National Research Hospital: This website of the Boys Town National Research Hospital (Omaha, Nebraska) is an institutionrecognized 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.

  • 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.

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.

Newborn Screening

Other Resources

  • 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.