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These 3 websites provide short summaries of the features found in Pendred syndrome.
National Institute on Deafness and other Communication Disorders
In a Q&A format, this website goes over many questions that may help you, and has a list of additional links that may be useful.
American Society for Deaf Children
Phone: 800-942-2732 (parent hotline) This website has educational and networking resources for families and children affected by hearing loss. Under the “snapshots” section, you can brochures on different topics, like cochlear implants. They also have a support group website listed below. (http://groups.yahoo.com/group/asdc_deafchildren )
National Association of the Deaf
Phone: 301-587-1788 Under the “Info Center” link, you can find answers to common questions that people have about hearing loss, its impacts, and educational and job opportunities. They also have a group for members.
National Parent to Parent Network
This network provides support groups for families with rare diseases. Since pendred syndrome has not yet been listed, you can form a new group or contact families affected with similar syndromes.