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.


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.


Transverse Myelitis Association

1787 Sutter Parkway
Powell, OH 43065-8806
Tel: 855-380-3330

Nonprofit organization dedicated to advocacy for those who have rare neuroimmunologic diseases of the central nervous system, including transverse myelitis (TM), acute disseminated encephalomyelitis (ADEM), optic neuritis, and neuromyelitis optica (Devic's disease). Facilitates support and networking programs, offers educational materials, sponsors an information clearinghouse, and investigates, advocates for, and supports research and innovative treatment efforts. Offers a newsletter and an international membership directory.


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.


United Leukodystrophy Foundation

224 North 2nd Street, Suite 2
DeKalb, IL 60115
Tel: 815-748-3211; 800-728-5483
Fax: 815-748-0844

Nonprofit voluntary health organization dedicated to providing patients and their families with information; assistance in identifying sources of medical care, social services, and genetic counseling; establishing a communication network among families; increasing public awareness, and acting as an information source for health care providers. Promotes supports research into causes, treatments, and prevention of the leukodystrophies.


United Mitochondrial Disease Foundation

8085 Saltsburg Road
Suite 201
Pittsburgh, PA 15239
Tel: 412-793-8077; 888-317-UMDF (8633)
Fax: 412-793-6477

Promotes research for cures and treatments of mitochondrial disorders and provides support for affected families. Represents adults and children alike and continues to serve families with a variety of programs.

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