Dystonia Patient & Family Resources
Movement disorder & dystonia related organizations for patients & families
General Dystonia/Movement Disorders
Dystonia Medical Research Foundation
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601-1905
Phone: 800-377-3978
Fax: 312-803-0138
Email: dystonia@dystonia-foundation.org
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892
Blepharospasm
Benign Essential Blepharospasm Research Foundation, Inc.
PO Box 12468
Beaumont, Texas 77726-2468
Tel: 409-832-0788
Fax: 409-832-0890
Email: bebrf@blepharospasm.org
Spasmodic Dysphonia/Laryngeal Dystonia
National Spasmodic Dysphonia Association
300 Park Boulevard, Suite 415
Itasca, IL 60143
Phone: 800-795-6732
Fax: 630-250-4505
Email: NSDA@dysphonia.org
American Speech Language and Hearing Association (ASHA)
2200 Research Boulevard
Rockville, MD 20850-3289
Tel: 800-638-8255
Fax: 301-296-8580
Email: actioncenter@asha.org
Spasmodic Torticollis/Cervical Dystonia
National Spasmodic Torticollis Association
9920 Talbert Avenue #233
Fountain Valley, CA 92708
Phone: 800-487-8385
Email: nstamail@aol.com
Dopa-Responsive Dystonia
Pediatric Neurotransmitter Disease Association
Email: pnd@pndassoc.org
Manufacturer Information Websites
Botox® A: botoxmedical.com, from Allergan Pharmaceuticals.
Myobloc® B: myobloc.com, from Solstice Neurosciences, Inc.
Activa Deep Brain Stimulation: Medtronic Medical Technology dystonia site.