Dystonia Coalition (DC)

Dystonia syndromes are disorders that cause uncontrollable, repetitive shaking, turning and twisting of affected body parts. The most common dystonia disorders affect the head and neck, eyelids, vocal cords, hands and forearms, and sometimes the entire body. The overall goal of the Dystonia Coalition is to hasten progress in dystonia research. Specific aims include understanding the natural history of dystonia syndromes, crafting formal diagnostic guidelines for these syndromes, creating a bank of DNA samples for dystonia research, and developing a standardized way to measure the severity of the disorder.

The Dystonia Coalition (DC) is part of the Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Office of Rare Diseases Research (ORDR). DC is funded under grant number U54NS116025 as a collaboration between NCATS and the National Institute of Neurological Disorders and Stroke (NINDS).