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.

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.

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.

Foundation for Dystonia Research

Foundation for Dystonia Research

http://foundationdystoniaresearch.org

FDR is a private, not-for-profit organization supporting and promoting research in Dystonia. The aim of this support is to improve diagnosis and therapy, and ultimately, to find a cure for this third most common Movement Disorder. We believe that, in the interest of people with Dystonia, groundbreaking research aimed at understanding the pathogenesis of Dystonia is the only way to develop better diagnostic tools and treatments.

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.

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.