Patient advocacy groups specializing in dystonias are here to help you. They are devoted to providing support, resources and services for patients and families. Join these groups to help yourself, your family, and other patients.
Benign Essential Blepharospasm Research Foundation (BEBRF)
The mission of the Benign Essential Blepharospasm Research Foundation, Inc. is to fund and promote medical research in the search for the cause and cure of blepharospasm, Meige, and other related disorders of the facial musculature, to provide support, education and referrals to persons with these disorders, and to disseminate information and serve as an authoritative resource to the medical community and the general public.
Dystonia Europe is a union of 18 national patient advocacy groups from 16 European countries, which support people living with any form of dystonia. Our aim is to work at the pan-European level to give added value to the work of our member groups. To achieve this, Dystonia Europe also works in partnership with other organisations and individuals, and with the medical profession, to stimulate dystonia research and awareness and to inform and influence the decisions of European policymakers in generic areas affecting neurological patients, particularly those living with dystonia.
The mission statement of Dystonia Ireland is to promote and encourage scientific research into the causes and treatments of dystonia, raise the level of awareness amongst the general public and the medical profession, offer support and information to all people with dystonia and their families nationwide.
Dystonia Medical Research Foundation (DMRF)
The mission of the DMRF is to advance research for more treatments and ultimately a cure, to promote awareness and education, and to support the needs and well being of affected individuals and families.
Dystonia Medical Research Foundation Canada (DMRFC)
The mission of DMRFC is to advance research for more treatments and ultimately a cure; to promote awareness and education; and to support the needs and well being of affected individuals and families.
Dystonia Network of Australia
Dystonia Network of Australia Inc. (DNA) is the National Peak Organization for all types of dystonia in Australia, providing a pathway to support, information, literature, and community awareness for adults and children living with dystonia as well as their caregivers and health providers.
The 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.
National Spasmodic Dysphonia Association (NSDA)
The mission of the National Spasmodic Dysphonia Association is to advance medical research into the causes of and treatments for spasmodic dysphonia, promote physician and public awareness of the disorder, and provide support to those affected by spasmodic dysphonia. The NSDA is the only organization dedicated solely to the SD community.
The National Spasmodic Torticollis Association (NSTA)
The mission of the National Spasmodic Torticollis Association (NSTA) is to support the needs and well being of affected individuals and families; to promote awareness and education; to advance research for more treatments and ultimately a cure.
New Zealand Dystonia Patient Network Inc. (NZDPN)
The New Zealand Dystonia Patient Network works to support dystonia patients with information, advice about living with dystonia, and networking opportunities. They also work to increase awareness and encourage and facilitate research.
Tyler's Hope for a Dystonia Cure
Tyler's Hope for a Dystonia Cure was created to passionately pursue solutions and a cure to the pain and limitations caused by DYT1 Dystonia. We are inspired by the fearless energy, courage and love of life exemplified daily by our namesake, his sister and all those affected by Dystonia.