The DMRF Canada is proud to be a member of 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.
The Dystonia Coalition is a groundbreaking collaboration of medical researchers and patient advocacy groups focused on accelerating clinical research in the field. Fifty-six research centers in North America, Europe, Asia, and Australia are participating. New investigators and institutions may join the effort at any time. The Dystonia Coalition began in 2009 with a $6 million, five-year grant from the Office of Rare Diseases Research (ORDR) and the National Institute of Neurological Disorders & Stroke (NINDS). The Coalition is currently funded through 2024 by the ORDR in the National Center for Advancing Translational Sciences (NCATS) and the NINDS. The Program Director is Dr. H. A. Jinnah of Emory University School of Medicine. DMRF Scientific Director Dr. Joel S. Perlmutter of Washington University in St Louis is Co-Director.
The Dystonia Coalition’s open invitation to new investigators and broad collaborations have led to the collection of unprecedented amounts of detailed clinical data, video recorded examinations, and DNA samples from thousands of individuals with dystonia across different projects. Additional accomplishments include developing and testing new rating scales for cervical dystonia, blepharospasm, and laryngeal dystonia. Dystonia Coalition investigators have published 180 research papers in the medical literature to share discoveries and advancements.
Principal Investigator H. A. ‘Buz’ Jinnah, MD, PhD provided an update on the activities and accomplishments of the Coalition and significance for the patient community. Watch here: https://youtu.be/rI0Vm2boWuo.
Learn more about how you can get involved here.
Visit their website for presentations or recordings of the Dystonia Coalition Annual Meetings https://dc.rarediseasesnetwork.org/events/past