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.


National Disease Research Interchange

1628 JFK Blvd.
8 Penn Cntr. 8th floor
Philadelphia, PA 19103
Tel: 215-557-7361; 800-222-NDRI (6374)
Fax: 215-557-7154

Non-profit organization engaged in the procurement and distribution of human tissues and organs for biomedical researchers.


National Dissemination Center for Children with Disabilities

U.S. Dept. of Education, Office of Special Education Programs
1825 Connecticut Avenue NW, Suite 700
Washington, DC 20009
Tel: 800-695-0285; 202-884-8200
Fax: 202-884-8441


National Down Syndrome Society

8 E. 41st Street, 8th Floor
New York, NY 10017
Tel: 212-460-9330; 800-221-4602
Fax: 212-979-2873

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.


National Dysautonomia Research Foundation

P.O. Box 301
Red Wing, MN 55066-0301
Tel: 651-327-0367
Fax: 651-267-0524

Non-profit foundation established to help those afflicted with any of the various forms of dysautonomia. Provides a support network for affected individuals and family members by providing information on the various forms of dysautonomia, as well as providing contacts to other organizations that may be of assistance.


National Eye Institute (NEI)

National Institutes of Health, DHHS
31 Center Drive, Rm. 6A32 MSC 2510
Bethesda, MD 20892-2510
Tel: 301-496-5248


National Fabry Disease Foundation

4301 Connecticut Avenue, NW
Suite 404
Washington, DC 20008-2369
Tel: 800-651-9131
Fax: 800-651-9135


National Fibromyalgia Association

3857 Birch Street, Suite 312
Suite 17-247
Newport Beach, CA 92260
Fax: 714-921-6920

Non-profit organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia by increasing the awareness of the public, media, government and medical communities.


National Fibromyalgia Partnership, Inc.

P.O. Box 2355
Centreville, VA 20122
Tel: 866-725-4404
Fax: 866-782-8528

Non-profit, membership organization, comprised of patients and medical professionals, which offers information on fibromyalgia, including the journal Fibromyalgia Frontiers.


National Foundation for the Treatment of Pain

P.O. Box 70045
Houston, TX 77270
Tel: 713-862-9332
Fax: 713-862-9346

Not-for-profit organization dedicated to providing support for patients who are suffering from intractable pain, their families, friends and the physicians who treat them. Offers a patient forum, advocacy programs, information, support resources, and direct medical intervention.


National Fragile X Foundation

1861 International Drive, Suite 200
McLean, VA 22102
Tel: 800-688-8765
Fax: 925-938-9315

Provides support, education, awareness, research, and legislative advocacy for all Fragile X-associated Disorders including fragile X syndrome (FXS), fragile X-associated tremor/ataxia syndrome (FXTAS), and fragile X-associated primary ovarian insufficiency (FXPOI).

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