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 Gaucher Foundation, Inc.

5410 Edson Lane, Suite 220
Rockville, MD 20852
Tel: 800-504-3189
Fax: 770-934-2911

Funds research for a cure and alternative treatments for Gaucher Disease; provides education, financial, support and mentor programs and advocates for legislation affecting the Gaucher and rare disease community.


National Headache Foundation

820 N. Orleans
Suite 201
Chicago, IL 60610-3132
Tel: 312-274-2650; 888-NHF-5552 (643-5552)
Fax: 312-640-9049

Non-profit organization dedicated to service headache sufferers, their families, and the healthcare practitioners who treat them. Promotes research into headache causes and treatments and educates the public.


National Health Council

1730 M Street, NW
Suite 500
Washington, DC 20036-3910
Tel: 202-785-3910
Fax: 202-785-5923

Association of voluntary health agencies, businesses, and not-for-profit organizations. Sponsors awareness campaigns to promote the health of all people and to advance medical research and the voluntary health movement.


National Health Information Center (NHIC)

U.S. Department of Health and Human Services
P.O. Box 1133
Washington, DC 20013-1133
Tel: 301-565-4167; 800-336-4797
Fax: 301-984-4256


National Heart, Lung, and Blood Institute (NHLBI)

National Institutes of Health, DHHS
31 Center Drive, Rm. 4A21 MSC 2480
Bethesda, MD 20892-2480
Tel: 301-592-8573; 240-629-3255 (TTY); Recorded Info: 800-575-WELL (9355)


National Heart, Lung, and Blood InstituteHealth Information Center

P.O. Box 30105
Bethesda, MD 20824-0105
Tel: 301-592-8573; 240-629-3255 (TTY); Recorded Info: 800-575-WELL (9355)


National Hospice and Palliative Care Organization/Natl. Hospice Foundation

1731 King Street
Alexandria, VA 22314
Tel: 703-837-1500; Helpline: 800-658-8898
Fax: 703-837-1233

Non-profit membership organization representing hospice and palliative care programs and professionals. Provides free referrals to the public for hospice listings across the United States and internationally. Distributes free packets of general information describing hospice services and the Medicare Hospice Benefit.


National Human Genome Research Institute (NHGRI)

National Institutes of Health, DHHS
31 Center Drive, Rm. 4B09 MSC 2152
Bethesda, MD 20892-2152
Tel: 301-402-0911


National Institute for Occupational Safety and Health

Centers for Disease Control and Prevention, DHHS
4676 Columbia Parkway, Mail Stop C-13
Cincinnati, OH 45226-1998
Tel: 800-232-4636
Fax: 513-533-8573


National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

National Institutes of Health, DHHS
31 Center Dr., Rm. 4C02 MSC 2350
Bethesda, MD 20892-2350
Tel: 301-496-8190; 877-22-NIAMS (226-4267)

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