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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.

Rubinstein-Taybi Syndrome, UK Support Group

Address

39 Hale Road
Heckington
United Kingdom

Phone

447-866-190

Fax

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800 Number

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TDD

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Email Address

mail@rtsuk.org

Website

http://www.rtsuk.org

The Rubinstein-Taybi Syndrome UK Support Group has been offering support for a number of years to parents with children affected by Rubinstein-Taybi syndrome. Characteristic features of this syndrome include short stature, broad thumbs and/or great toes, facial abnormalities, and learning disabilities. Initially, one mother who kept in touch with everyone by telephone or letter gave support. In 1986, a few families organized the support group by producing a newsletter and arranging annual get-togethers. Since then, the group has grown from 45 to 142 families, and it offers support to a number of families in other countries where there is no support group.

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