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.

(Source: Dystonia Coalition, undated, accessed 9 June 2022, <https://www1.rarediseasesnetwork.org/cms/dystonia/About-Us>)

 

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.

(Source: CC-DR Annual Report January 2019 to December 2019, accessed 9 June 2022, <https://www.cc-dr.org/wp-content/uploads/2019_ANNUAL-REPORT.pdf>)

 

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.

(Source: NZ Dystonia Patient Network, undated, accessed 9 June 2022, <https://www.dystonia.org.nz>)

 

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.

(Source: Dystonia Medical Research Foundation, 2021, accessed 9 June 2022, <https://dystonia-foundation.org/about-us/mission/>)

 

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.

(Source: Dystonia Europe, 2022, accessed 9 June 2022, <https://dystonia-europe.org/about-us/the-organisation>)

 

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.

(Source: Dystonia UK, undated, accessed 9 June 2022, <https://www.dystonia.org.uk/who-we-are>)
Strengthening the DNA & NZDPN Dystonia Alliance

DNA Seminar 2016 with the NZ Dystonia Patient Network

With Monika from Dystonia Euope