Branchiootic syndrome

Organizations

Are there any support groups for branchiootic syndrome?

There are support groups for branchiootic syndrome and the related branchiootorenal (BOR) syndrome. Some are specific for these disorders, and some are for certain features of this condition. They are the following:

The Cain Foundation for Branchio-Oto-Renal (BOR) Syndrome is located in Australia. There are no U.S. support groups for these disorders.

American Academy of Audiology

11480 Commerce Park Drive

Suite 220

Reston, VA 20191

Phone: (703) 790-8466

Toll-free: (800) 222-2336

Email: infoaud@audiology.org

Website: http://www.audiology.org

American Society for Deaf Children

800 Florida Avenue NE, #2047

Washington, DC 20002-3695

Phone: (866) 895-4206

Toll-free: (800) 942-2732

Email: asdc@deafchildren.org

Website: http://www.deafchildren.org

Let Them Hear Foundation

1900 University Avenue, Suite 101

East Palo Alto, CA 94303

Phone: (650) 462-3174

Email: info@letthemhear.org

Website: http://www.letthemhear.org

National Association of the Deaf (NAD)

8630 Fenton Street, Suite 820

Silver Spring MD 20910

Phone: 301-587-1788; 301-587-1789 (TTY)

Fax: 301-587-1791

Email: nad.info@nad.org

Website: https://www.nad.org/

References
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Where do I find other people with branchiootic syndrome?

Where do I find other people with branchiootic syndrome?

Support groups can put you in contact with other people or families that have branchiootic syndrome and the related branchiootorenal (BOR) syndrome. Support groups include the Cain Foundation for Branchio-Oto-Renal (BOR) Syndrome is located in Australia. There are no U.S. support groups for these disorders.

There are also online communities for rare disorders such as RareConnect, RareShare, or Inspire, which allow individuals and parents to share experiences and advice about dealing with rare disorders.

Some social networking websites such as Facebook may have groups or communities for branchiootic syndrome.

References

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