Patient Organizations

Patient Organizations


This listing is not intended to be a comprehensive listing of all not-for-profit health agencies in the United States, nor does inclusion of any particular organization imply endorsement by the National Institutes of Health or the Department of Health and Human Services. Our intent is to provide information useful to individuals nationally, and for this reason we have not included many local groups that offer valuable assistance to patients and their families within a limited geographic area. Many of the organizations listed in this directory have information available to the public on the World Wide Web.


The Guthy-Jackson Charitable Foundation

10525 Vista Sorrento Pkwy
Suite 210
San Diego, CA 92121
Tel: 858-638-7638
Fax: 858-638-7698


The Multiple System Atrophy Coalition

9935-D Rea Road
Charlotte, NC 28227
Tel: 866-737-5999

National support group that collects and disseminates information and promotes education and support for people affected by Shy-Drager Syndrome or multiple system atrophy.


The Parkinson's Institute and Clinical Center

2500 Hospital Drive
Building #0, Suite 1
Mountain View, CA 94040
Tel: 408-734-2800; 800-655-2273
Fax: 408-734-8522

Non-profit organization conducting patient care and research activities in the neurological specialty area of movement disorders.


ThinkFirst National Injury Prevention Foundation

1801 N. Mill Street
Suite F
Naperville, IL 60563
Tel: 630-961-1400; 800-THINK-56 (844-6556)

National injury prevention program dedicated to preventing brain, spinal cord, and other traumatic injuries through the education of individuals, community leaders, and creators of public policy. ThinkFirst is a 501(c)(3) organization.


TMJ Association Ltd.

P.O. Box 26770
Milwaukee, WI 53226-0770
Tel: 262-432-0350
Fax: 262-432-0375

National non-profit organization providing information on Temporomadibular Joint and Muscle Disorders (TMJDs), pain and/or dysfunction of the jaw joint affecting a person's ability to speak, eat, chew, smile, kiss, and even breathe. The TMJ Association Ltd., is dedicated to promoting awareness, education and scientific research.


Tourette Association of America

42-40 Bell Boulevard
Suite 205
Bayside, NY 11361-2820
Tel: 888-4486-8738
Fax: 718-279-9596

Association dedicated to serving people with Tourette Syndrome and funding scientific research. TSA maintains chapters in each state and cooperates with contacts in 45 foreign countries. Inquirers receive free material and a local physician referral listing. TSA publishes materials for families, physicians, and researchers and offers a quarterly newsletter.


Tremor Action Network

P.O. Box 5013
Pleasanton, CA 94566-5013
Tel: 510-681-6565; 925-462-0111
Fax: 925-369-0485

National non-profit dedicated to increasing awareness of essential tremor by advocating for a cure through research. Offers support for patients, family members, and caregivers through a quarterly newsletter, videos, and guidance from advocates.


Tuberous Sclerosis Alliance

801 Roeder Road
Suite 750
Silver Spring, MD 20910-4467
Tel: 301-562-9890; 800-225-6872
Fax: 301-562-9870

National non-profit voluntary health organization dedicated to finding a cure for tuberous sclerosis while improving the lives of those affected.


United Brachial Plexus Network

32 William Road
Reading, MA 01867
Tel: 781-315-6161; 866-877-7004
Fax: 866-877-7004

Non-profit organization devoted to providing information, support and leadership for families and those concerned with brachial plexus injuries and their prevention worldwide.


United Cerebral Palsy (UCP)

1825 K St NW
Suite 600
Washington, DC 20006
Tel: 202-776-0406; 800-USA-5UCP (872-5827)
Fax: 202-776-0414

Educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities.

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