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.
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.
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.
Learn more about the Dystonia Coalition Blepharospasm study here.