Resources- Specific Diagnosis Card Catalog- Dystonia

Who to Contact

Dystonia Medical Research Foundation
One E Wacker Drive, Suite 2430
Chicago, IL USA 60601-1905
312-755-0198 (phone)
800-361-8061 (In Canada)
312-803-0138 (fax)
E-mail: dystonia@dystonia-foundation.org
Web: www.dystonia-foundation.org

Related Diagnosis: Idiopathic Torsion Dystonia (ITD), Generalized Dystonia, Segawa's Dystonia, X-Linked Dystonia, Blepharospasm, Spasmodic Torticollis, Oromandibular dystonia (Meige's syndrome) Spasmodic dysphonia.

Dystonia Medical Research Foundation (DMRF) has a mission to advance research into the cause of and cure for dystonia; to create physician and public awareness; and to sponsor patient support groups. The Foundation serves people with dystonia, and their friends and family. They have local support groups, and will provide materials or assistance in starting a local group. Call to locate the group nearest you. They also have a parents' directory.

Dystonia Medical Research Foundation publishes Dystonia Dialogue four times a year at no cost to members. The DMRF offers several pamphlets about various types of dystonia, including: Spasmic Torticollis, Spasmodic Dysphonia, and Blepharospasm, and "8-18", A Guidebook for Young People with Dystonia, and a Guidebook for Families: Special Education Rights. DMRF has books and videos for distribution and you can also request a reading list of articles or books pertaining to dystonia.

The organization maintains a physician referral list of doctors who treat dystonia. They host an annual conference; contact DMRF for more information.

Where to Go to Chat with Others

Dystonia
This list is for all that are interested in sharing information about movement disorders mainly Dystonia and sharing/caring about each other.

DBS for Dystonia
This group is designed for people with Dystonia, a neuromuscular movement disorder, who have had the Activa Deep Brain Stimulation Implant Surgery, or who are thinking about having it and are looking for more information.

Learn More About It

Dystonia: Your Questions Answered

Dystonias: Fact Sheet
From the National Institute of Neurological Disorders and Stroke

What is Dystonia?

Links

Dystonia Dialogue

The Dystonia Society-United Kingdom

Dystonia On-Line Support Group