Click on the name of the organisation to go to their website.
Dystonia Coalition
The Dystonia Coalition is a collaboration of medical researchers and patient advocacy groups that is working to advance the pace of clinical and translational research in the dystonia to find better treatments.
Centre for Community Driven Research
The CC-DR is a non-profit organisation whose vision is to facilitate meaningful connection between service providers, research organisations, the non-profit sector, practitioners, industry, government and the communities for which they provide a service or aim to benefit.
New Zealand Dystonia Patient Network
The mission of the NZ Dystonia Patient Network is to support dystonia patients with information and advice about living with dystonia and networking opportunities; to increase awareness about dystonia – both among the medical community and the general public; to encourage and facilitate research, with the aim of seeking better treatments, prevention and a cure.
International Parkinson and Movement Disorder Society
This is an organisation comprising over 11,000 clinicians, scientists and other healthcare professionals dedicated to improving the care for movement disorders including dystonia. They have a number of fact sheets about various movement disorders in English and over 30 different languages on their website. On 29th November 2022 they held their inaugural World Movement Disorders Day which involved a Zoom presentation by a number of health professionals in the Oceania Region. The panel presentation can be viewed here. The short dystonia overview by Professor Raymond Rosales can be viewed here.
Dystonia Medical Research Foundation (United States)
The mission of the Dystonia Medical Research Foundation is to advance research for more treatments and ultimately a cure, to promote awareness and education, and to support the needs and wellbeing of affected individuals and families.
Dystonia Europe
Dystonia Europe aims to provide an international platform at the European level that will provide the possibilities for members to add value to their own activities and services, and to improve the lives of people living with dystonia, and to stimulate research for more effective treatment and, ultimately, to find a cure.
Dystonia UK
The mission of Dystonia UK is to give hope and support to everyone living with dystonia and to create UK and worldwide awareness.
FND Hope (US and UK)
This organisation is a patient led charity which provides information for people who are diagnosed with Functional Neurological Disorder (FND).
Page last reviewed and updated 9 February 2023
