About Us

What is the Dystonia Coalition?

The Dystonia Coalition is a collaboration of medical researchers and patient advocacy groups supported by the Office of Rare Diseases Research in the National Center for Advancing Translational Sciences and The National Institute of Neurological Disorders and Stroke (NINDS) at the NIH. Our mission is to advance the pace of clinical and translational research in the dystonias to find better treatments and a cure. Our objectives are to develop a fuller understanding of the many different features of dystonia and how they change over the years, to develop validated diagnostic strategies and rating tools for diagnosis and monitoring patients in clinical trials, to establish a biorepository where samples of blood and other materials can be stored and distributed for research, to catalyze clinical trials for promising new treatments and to promote education and awareness. 

Emory University serves as the Central Coordinating Center for the Dystonia Coalition's activities. Four main research projects have been directed through four Project Centers. Washington University in St. Louis is directing the Natural History with Linked Biorepository project encompassing all of the focal dystonias. The Intramural group at the NINDS is directing the project involving Development of Comprehensive Rating Tools for Blepharospasm. The two other projects have completed their activities except for some final analyses and publications. Rush University in Chicago directed the project involving Development of Comprehensive Rating Tools for Cervical Dystonia. And, James Madison University in Harrisonburg, VA directed the project involving Diagnostic and Rating Tools for Spasmodic Dysphonia. In addition to the five centers outlined above, the Dystonia Coalition has more than 40 Participating Clinical Centers distributed throughout North America and Europe. The Dystonia Coalition uses an open-door policy in which new investigators and institutions may join the effort at any time. Each of these centers may participate in ongoing research projects, submit proposals for new projects, or nominate candidates for career development awards.

Integral to our mission are our patient advocacy groups including Action for Dystonia, Diagnosis, Education and Research, Beat Dystonia, The Benign Essential Blepharospasm Research Foundation, Cure Dystonia Now, DySTonia, Dystonia Europe, Dystonia Ireland, The Dystonia Medical Research Foundation, The Dystonia Medical Research Foundation-Canada, The Dystonia Society, Dystonie-Québec, The National Spasmodic Dysphonia Association, The National Spasmodic Torticollis Association, and Tyler's Hope. Each of our patient advocacy groups is encouraged to be involved in the yearly meeting of the Dystonia Coalition, participate in the Pilot Projects Program or Career Development Program, and refer patients to our centers for participation in studies or expert treatment, and help keep patients and providers well informed. 

The primary goal of the Dystonia Coalition is to conduct research relating to dystonia. The academic centers in the Dystonia Coalition all have a special interest in dystonia research, as well as expertise in its diagnosis and treatment of all forms of dystonia. We therefore expect many patients to come to these centers for both research opportunities and expert clinical care. The Dystonia Coalition welcomes patients to come for either or both.