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Patient Advocacy Groups


Beat Dystonia

The mission of BEAT DYSTONIA is to encourage and fund scientific research for advanced treatments and ultimately, a cure for dystonia; personally advocate for those living with dystonia and their families and finally, to tirelessly raise awareness about dystonia in mainstream worldwide media. Beat Dystonia operates with zero overhead. 

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Benign Essential Biepharospasm Research Foundation

Promotes the search for the cause, a cure, and treatments for benign essential blepharospasm and other related disorders and infirmities of the facial musculature.

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Dysphonia International

Dysphonia International, formerly the National Spasmodic Dysphonia Association (NSDA), is dedicated to improving the lives of people affected by spasmodic dysphonia and related voice conditions by finding answers through research, building understanding through education and awareness, and raising hope through support for those living with these challenging vocal disorders.

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Dystonia Europe

Improves quality of life for people living with dystonia in Europe and supports the search for a cure.


Dystonia Ireland

Promotes scientific research into the causes and treatments of dystonia, raises awareness, and offers support and information to patients and families.

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Dystonia Medical Research Foundation

Works to find a cure and serve people affected by dystonia and their families.

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Dystonia Medical Research Foundation Canada

Advances research, promotes awareness and education, and supports the needs and well-being of individuals and families affected by dystonia.


Dystonia Network of Australia

Provides a pathway to support, information, literature, and community awareness for those affected by dystonia and their caregivers.


Dystonia UK

Dystonia UK is the only national charity in the United Kingdom dedicated to helping people living with dystonia. They provide support for people with dystonia and their families through the publication of information and updates, influencing national policies and best practice, supporting research and development, and raising awareness of the little-known condition.

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National Spasmodic Torticollis Association

Supports the needs and well-being of individuals with torticollis and their families through awareness, education, and advancement of research.

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New Zealand Dystonia Patient Network

Supports dystonia patients, increases awareness, and facilitates research with the aim of seeking better treatments, prevention, and a cure.


Tyler's Hope for a Dystonia Cure

Works to advance research for a cure, discover effective treatments, and promote awareness and education of DYT1 dystonia.