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.

Dana Foundation

10 Rockefeller Plaza, 16th Floor
New York, NY 10020
Tel: 212-223-4040
Fax: 212-593-7623

Supports brain research through grants, educates the public about the successes and potential of brain research, and produces free publications.

Dandy-Walker Alliance, Inc.

10325 Kensington Pkwy.
Suite 384
Kensington, MD 20895
Tel: 877-326-3992

Nonprofit organization committed to educational and informational activities, programs and publications, and supporting non-partisan research and events to increase public awareness for Dandy-Walker. Supports all efforts to determine the cause(s) of, find the cure for and to ameliorate the effects of Dandy-Walker.

Daniel Heumann Fund for Spinal Cord Research

6516 Truman Lane
Falls Church, VA 22043-1821
Tel: 703-442-8797
Fax: 703-448-6914

Funds breakthrough research to find a cure for paralysis caused by spinal cord injury.

Davis Phinney Foundation

357 S. McCaslin Boulevard, Suite 105
Louisville, CO 80027
Tel: 866-358-0285; 303-733-3340
Fax: 303-733-3350

Dedicated to helping people with Parkinson’s disease to live well today. Provides information, inspiration, tools, resources, and opportunities to people living with PD and care partners to better manage their disease and promote increased engagement in health.

Defeat MSA Alliance

29924 Jefferson Avenue
Saint Clair Shores, MI 48082
Tel: 855-542-5672

Department of Agriculture (USDA)

National Agricultural Library
10301 Baltimore Avenue
Beltsville, MD 20705-2351
Tel: 301-504-5755; 301-504-6856 (TTY)
Fax: 301-504-6927

Department of Health and Human Services

200 Independence Avenue, S.W.
Washington, DC 20201
Tel: 202-619-0257; 877-696-6775

Department of Veterans Affairs (VA)

Public Affairs & Intergovernment Affairs Consumer Affairs Service (075B)
810 Vermont Avenue, N.W.
Washington, DC 20420
Tel: 202-273-5770; 800-827-1000

Diann Shaddox Foundation for Essential Tremor

241 Boxelder Drive
Aiken, SC 29803
Tel: 803-761-2860
Fax: 803-641-0640

Disability Resources

Four Glatter Lane
Centereach, NY 11720-1032
Tel: 631-585-0290
Fax: same

Non-profit organization that works to promote and improve awareness, availability, and accessibility of information to help people with disabilities live, learn, work, and play independently. Disseminates information through a newsletter, a guide to toll-free telephone resources, a website, and other tools.