Improved care for people with dystonia presents a number of challenges. Major gaps in knowledge exist with regard to how to optimize the diagnostic process, how to leverage discoveries in pathophysiology into biomarkers, and how to develop an evidence base for current and novel treatments. These challenges are made greater by the realization of the wide spectrum of symptoms and difficulties faced by people with dystonia, which go well-beyond motor symptoms. A network of clinicians, scientists, and patients could provide resources to facilitate information exchange at different levels, share mutual experiences, and support each other's innovative projects. In the past, collaborative initiatives have been launched, including the American Dystonia Coalition, the European Cooperation in Science and Technology (COST-which however only existed for a limited time), and the Dutch DystonieNet project. The European Reference Network on Rare Neurological Diseases includes dystonia among other rare conditions affecting the central nervous system in a dedicated stream. Currently, we aim to broaden the scope of these initiatives to a comprehensive European level by further expanding the DystoniaNet network, in close collaboration with the ERN-RND. In line with the ERN-RND, the mission of DystoniaNet Europe is to improve care and quality of life for people with dystonia by, among other endeavors, facilitating access to specialized care, overcoming the disparity in education of medical professionals, and serving as a solid platform to foster international clinical and research collaborations. In this review, both professionals within the dystonia field and patients and caregivers representing Dystonia Europe highlight important unsolved issues and promising new strategies and the role that a European network can play in activating them.

Department of Clinical and Experimental Medicine University of Messina Messina Italy

Department of Neurology and Centre of Clinical Neuroscience 1st Faculty of Medicine Charles University Prague Czechia

Department of Neurology Haga Teaching Hospital The Hague Netherlands

Department of Neurology Istituto di Ricovero e Cura a Carattere Scientifico Humanitas Research Hospital Milan Italy

Department of Neurology Leiden University Medical Centre Leiden Netherlands

Department of Neurology St Vincent's University Hospital Dublin Ireland

Department of Neuroscience Biomedicine and Movement Science University of Verona Verona Italy

Department of Neurosurgery Medizinische Hochschule Hannover Hanover Germany

Dystonia Europe Brussels Belgium

Expertise Centre Movement Disorders Groningen Department of Neurology University Medical Centre Groningen Groningen Netherlands

Institute of Medical Genetics and Applied Genomics and Centre for Rare Diseases University of Tübingen Tübingen Germany

Neuroscience Research Centre Institute of Molecular and Clinical Sciences St George's University of London London United Kingdom

Pediatric Neurology Research Group Hospital Vall d'Hebron Institut de Recerca Barcelona Spain

School of Medicine Trinity College The University of Dublin Dublin Ireland

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