International Patient Groups
International Patient Groups
EUROPE
Dystonia Europe
http://dystonia-europe.org/
Dystonia Europe is a non-profit organisation registered in Belgium and serving the needs of everybody with an interest in dystonia. Dystonia Europe has 20 national member organisations from 17 countries and is representing the interests of more than 500,000 dystonia patients and their families across Europe.
Visit www.dystonia-europe.org for more information.
UNITED STATES
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.
Visit www.dystonia-foundation.org
National Spasmodic Dysphonia Association
National Spasmodic Dysphonia Association
300 Park Boulevard, Suite 335
Itasca, IL 60143
Phone: 800-795-6732
Fax: 630-250-4505
NSDA@dysphonia.org
www.dysphonia.org
About the NSDA:
The mission of the NSDA 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. It is the only organization dedicated solely to spasmodic dysphonia.
Founded in 1989, the National Spasmodic Dysphonia Association (NSDA) is a not-for profit 501(c)3 organization dedicated to advancing medical research into the causes of and treatments for SD, promoting physician and public awareness of the disorder, and providing support to those affected by SD through symposiums, support groups, and on-line resources.
NSDA is comprised of people with SD, healthcare professionals, volunteers, friends, and families. It is the only organization dedicated solely to the SD community.Together, we continue to grow through awareness, advocacy, and outreach; help to improve the lives of people dealing with SD; and work to support research in order to bring understanding to this disorder.
Benign Essential Blepharospasm Research Foundation, Inc. (BEBRF)
www.blepharospasm.org/
The purpose of the BEBRF is “…to undertake, promote, develop and carry on the search for the cause and a cure for benign essential blepharospasm and other related disorders and infirmities of the facial musculature…” (Mattie Lou Koster, Founder).
The Foundation is the only organization solely dedicated to finding the cause and a cure for blepharospasm and Meige.
National Spasmodic Torticollis Association
The mission of the National Spasmodic Torticollis Association 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.
Spasmodic Torticollis is not an easily recognized by the general public and there are medical professionals who are not familiar with this movement disorder. A person can feel like they are an isolated case and feel there is no one that understands what they are going through.