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.
c/o The Secretary
4 Glen Douglas Road
Renfrewshire, PA16 9NP Scotland
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.
The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.
NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.