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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.

Dancing Eye Syndrome Support Trust

a/k/a: DES Support Trust

Address

c/o The Secretary
4 Glen Douglas Road
Renfrewshire, PA16 9NP
Scotland

Phone

014-757-94577

Fax

014-757-94577

800 Number

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TDD

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Email Address

support@dancingeyes.org.uk

Website

http://www.dancingeyes.org.uk

The Dancing Eye Syndrome Support Trust is an international, voluntary organization based in the United Kingdom that is dedicated to providing information and support to individuals and families affected by dancing eye syndrome. Dancing eye syndrome (also known as Kinsbourne syndrome or opsoclonus myoclonus) is a rare neurological disorder of unknown cause that typically becomes apparent between the ages of one and three years, although in rare cases, it may occur at any time during childhood or early adolescence. The disorder is characterized by an unsteady gait; rhythmic, involuntary motions of certain areas during voluntary movements (intention tremor); brief, shock-like muscle spasms of the arms, legs, or entire body (myoclonus); and irregular, rapid, horizontal and vertical eye movements (opsoclonus). Formed in 1988 as a support group in the United Kingdom, the Dancing Eye Syndrome Support Trust became a trust in 1997. The trust is committed to enabling parents of affected children to exchange information, support, and resources. In addition, the Dancing Eye Syndrome Support Trust holds regular meetings for members, promotes research, and offers a variety of materials including pamphlets and a regular newsletter.

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