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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Townes-Brocks Syndrome International Support Network

a/k/a: TBSISN

Address


Website

http://health.groups.yahoo.com/group/Townes-Brocks-Syndrome/

The Townes-Brocks Syndrome International Support Network is a voluntary, non-profit organization that has an international online support network for people affected by Townes-Brocks Syndrome (TBS). This group is open to those interested in making friends, as well as sharing information and support with others affected by this disorder. It provides TBS members, their families and friends a forum where they can come together to share and learn about the rare syndrome from a laymen's point of view. This support group also provides a place where members can receive advice on how to seek referrals to medical and professional agencies worldwide to search and gather their own private medical advice and assistance. Townes-Brocks syndrome (TBS) is an autosomal dominant genetic disorder characterized by absence of the anal opening (imperforate anus), abnormal ears associated with hearing impairment and thumb malformations. Abnormalities in the feet, heart and kidneys also occur frequently. Townes-Brocks syndrome is associated with a mutation in the SALL1 gene.

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