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.


Food and Drug Administration (FDA)

U.S. Department of Health and Human Services
5600 Fishers Lane, CDER-HFD-240
Rockville, MD 20857
Tel: 301-827-4573; 888-INFO-FDA (463-6332)


Foundation Fighting Blindness

7168 Columbia Gateway Drive
Suite 100
Columbia, MD 21046
Tel: 800-683-5555

Works to discover the causes, treatments, preventions, and cures for a number of disorders involving retinal degeneration. Funds research, sponsors conferences, and offers information to the public and professionals.


Foundation for Peripheral Neuropathy

485 Half Day Road
Suite 350
Buffalo Grove, IL 60089
Tel: 877-883-9942
Fax: 847-883-9960

A 501(c)(3) public foundation whose mission is to dramatically improve the lives of people living with peripheral neuropathy, to be the catalyst for advancing innovative therapeutic developments and accelerating a cure for painful neuropathies by funding collaborative efforts of leading scientists and physicians, and to develop outreach programs to patients, their families and healthcare professionals.


FRAXA Research Foundation [for Fragile X Syndrome]

45 Pleasant Street
Newburyport, MA 01950
Tel: 978-462-1866
Fax: 978-463-9985

Funds research, sponsors education and support programs on Fragile X syndrome, the most common inherited cause of mental retardation and developmental disabilities.


Friedreich's Ataxia Research Alliance (FARA)

533 W. Uwclan Avenue
Downington, VA 22151
Tel: 703-426-1576
Fax: (703) 425-0643

National non-profit organization dedicated to the pursuit of educational, scientific and research activities leading to treatments for Friedreich's ataxia.


Friend's Health Connection

54 Hudson Street
Suite 203B
Freehold, NJ 07728
Tel: 732-418-1811; 800-483-7436
Fax: 732-249-9897

Non-profit support network that connects people with similar health problems and helps individuals cope with illness through the power of friendship.


GBS/CIDP Foundation International

375 East Elm Street
Suite 101
Conshohocken, PA 19428
Tel: 866-224-3301
Fax: 610-667-7036

Voluntary, nonprofit organization that provides support to patients with Guillain-Barré and their families, awards grants to researchers, and offers educational materials to the public and professional communities.


Genetic Alliance

4301 Connecticut Avenue, N.W.
Suite 404
Washington, DC 20008-2369
Tel: 202-966-5557; 800-336-GENE (4363)
Fax: 202-966-8553

International coalition representing 600 consumer and professional organizations. Supports individuals and families with genetic conditions; educates the public; and advocates for consumer-informed public policies.


Genetic and Rare Disease Information Center

National Center for Advancing Translational Sciences
P.O. Box 8126
Gaithersburg, MD 20898-8126
Tel: 888-205-2311


Genetic and Rare Diseases Information Center (GARD)

National Institutes of Health, DHHS
P.O. Box 8126
Gaithersburg, MD 20898-8126
Tel: 888-205-2311

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