Links

The following links may be of interest to you and your family affected by WS.

A.G. Bell Association for the Deaf
A.G. Bell Association is a network of parents who dispense information on education, early diagnosis and auditory, language and speech training for children who are deaf.

Auditory-Verbal International, Inc.
Auditory-Verbal International, Inc. provides the option of listening and speaking as a way of communication for children and adults who are deaf.

Center for Craniofacial Development and Disorders
CCDD is associated with Johns Hopkins University and offers information about craniofacial issues for families, physicians, and researchers.

Cleft Palate Foundation
The American Cleft Palate-Craniofacial Association includes important facts about cleft lip, palate and other craniofacial conditions. It has fact sheets covering a wide array of topics, information about team care and stories of the month from families.

Cochlear Implant Association
The Cochlear Implant Association of Wisconsin gives support for cochlear implant recipients and their families. The association offers pre- and post-operation counseling and information on new technology. Other Cochlear Implant Association links are available on associations in Georgia and the UK.

Exceptional Parent
Exceptional Parent is a resource that presents parents of children with disabilities with support, ideas and outreach.

Forward Face
This site provides support services for children and their families in managing their craniofacial condition. The organization works to educate its members and the public to increase awareness and acceptance of individuals with facial differences.

Gallaudet University
Gallaudet University is the leader in the education and career development of individuals who are deaf or hard of hearing. Gallaudet’s Laurent Clerc National Deaf Education Center serves children with hearing loss throughout the United States.

Boys Town National Research Hospital
Boys Town National Research Hospital is a division of Girls and Boys Town, providing nationally-oriented clinical and research programs focusing on childhood deafness, visual impairment and related communication disorders.
This National Research Hospital provides clinical care as well as research and is dedicated in improving the lives of children and their families through education and technology.

Let's Face It
Let's Face It is nonprofit network that links people with facial disfigurement to numerous resources. Both specific and general consitions are discussed as well as news and conferences concerning facial anomilies.

Miami University Speech Pathology and Audiology
The Miami University Speech and Hearing Clinic provides hearing and speech/language evaluations and treatment.

National Institute on Deafness and other Communication Disorders
The website for this organization provides information on deafness and communication options, as well as an overview of Waardenburg’s Syndrome.

National Organization of Albinism and Hypopigmentation (NOAH)
The National Organization of Albinism and Hypopigmentation (NOAH) provides information and support to individuals who have pigmentary conditions.

Self Help for Hard of Hearing People
SHHH is the largest organization for people with hearing loss. Their website offers individuals with hearing loss information, advocacy, education and support.

U.S. National Library of Medicine
The National Library of Medicine offers information to help individuals understand genetic conditions.

Wide Smiles
Wide Smiles focuses on issues of cleft lip and palate. It discusses many topics, such as insurance, speech, audiology, school and self-esteem concerns.

Waardenburg Syndrome Discussion Group
This discussion group was established through yahoo.com for patients, family, educators and medical professionals interested in sharing information and/or support regarding WS. A list of other WS support groups through Yahoo can be found here.