Action for Dystonia, Diagnosis, Education and Research (ADDER)

Chairwoman and Contact:
Ann Smith

St. Chad’s Community Project,
21 Liddell Terrace,
Bensham, Tyne & Wear, NE8 4QL

Tel.: +44 191 477 7700

eMail: adder.adder2@btconnect.com

Web Site: www.dystonia.co.uk

ADDER was founded in 1999 and the number of members is now over  500. An Executive Committee of 12 people who have or are married to people with dystonia meets monthly and is supported by a Medical Advisory Board of 6 Doctors.

A monthly newsletter and quarterly magazine is published, as well as various leaflets for members and people with dystonia.

A very intensive Epidemiological Survey of Dystonia was started in 1993 with just 147 people and has now been completed after 12 years with over 2100 people within the North East of England.  A book will be published on this research in 2006. Follow-up research has already started into the Genetic Database of Dystonia on all 2000 people who still take part in the study and will continue until 2007