Patient Support and Advocacy Groups

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.

Action for Dystonia, Diagnosis, Education and Research (ADDER)

Action for Dystonia, Diagnosis, Education and Research (ADDER)

www.actionfordystonia.co.uk

ADDER’s mission is 1) to advance the education of the public in relation to the sickness and distress caused by the neurological conditions known as dystonia; 2) to promote the treatment of people with dystonia and other related movement disorders; 3) to offer support and welfare to patients, their carers and families; 4) to promote awareness and encourage research amongst the medical profession of the neurological conditions known as dystonia.

Beat Dystonia
 

Beat Dystonia

www.cftexas.org/dystonia-fund

BEAT DYSTONIA will continue to create international awareness via print, speeches and press, raise money for research, advocate for patients, refer patients to specialists and will do all with minimal overhead.

Benign Essential Blepharospasm Research Foundation (BEBRF)

Benign Essential Blepharospasm Research Foundation (BEBRF)

www.blepharospasm.org

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.

Cure Dystonia Now

Cure Dystonia Now (CDN)

www.curedystonianow.org

Cure Dystonia Now is a non-profit 501(c)(3) charitable foundation committed to advancing research for more and/or improved treatments, and ultimately a cure, for Dystonia.

spasmodictorticollis.org

ST/Dystonia

spasmodictorticollis.org

The mission of ST/Dystonia is helping people find a faster diagnosis and more effective treatment; thus empowering them to achieve a higher quality of life.

Dystonia Europe

Dystonia Europe

www.dystonia-europe.org

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.

Dystonia Ireland

Dystonia Ireland

www.dystonia.ie

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 IMedical Research Foundation

Dystonia Medical Research Foundation (DMRF)

www.dystonia-foundation.org

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)

Dystonia Medical Research Foundation Canada (DMRFC)

www.dystoniacanada.org

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 Society

The Dystonia Society (TDS)

www.dystonia.org.uk

The Dystonia Society is a charity in the United Kingdom providing support, advice and information for anyone affected by dystonia.  We aim to ensure that everyone affected has access to the most appropriate treatment and support to achieve the best possible quality of life.

Dystonie-Quebec

Dystonie-Québec

www.dystonie-qc.org

Our mission is to provide support to French speakers, to find a cure for the disease due to efforts in the areas of research, education, support services and to provide advocacy for those affected.

Notre mission est d’apporter un appui francophone, pour trouver un remède à la maladie grâce aux efforts consentis dans les secteurs de la recherche, de l’éducation, des services de soutien et de la défense des intérêts des personnes atteintes.

The Kurt B. Seydow Dystonia Foundation

The Kurt B. Seydow Dystonia Foundation

www.KBSDystonia.org

The mission of The Kurt B. Seydow Dystonia Foundation is to promote education and awareness of Dystonia among the general public and medical community; to advance medical research to ultimately find a cure, and to support the Dystonia Community at large.

National Spasmodic Dysphonia Association (NSDA)

National Spasmodic Dysphonia Association (NSDA)

www.dysphonia.org

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 National Spasmodic Torticollis Association (NSTA)

www.torticollis.org

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.

Tyler's Hope for a Dystonia Cure

Tyler's Hope for a Dystonia Cure

www.tylershope.org

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.