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.


Neurofibromatosis Network

213 S. Wheaton Avenue
Wheaton, IL 60187
Tel: 630-510-1115; 800-942-6825

Non-profit organization made up of independent state and regional chapters that provide support and services to NF families. Provides patient/family and public education, supports research, publishes a newsletter, and sponsors meetings and chapters nationwide.


Nevus Outreach, Inc

600 SE Delaware Ave
Suite 200
Bartlesville, OK 74
Tel: 918-331-0595
Fax: 281-417-4020

Nevus Outreach is dedicated to: improving awareness and providing support for people affected by congenital pigmented nevi, and finding a cure.


NIAID Office of Communications and Government Relations

National Institutes of Health, DHHS
5601 Fishers Lane, MSC 9806
Bethesda, MD 20892
Tel: 301-496-5717


Occupational Safety & Health Administration

U.S. Department of Labor
200 Constitution Avenue, NW
Washington, DC 20210
Tel: 800-321-OSHA (6742)


Office of Clinical Center Communications

National Institutes of Health, DHHS
6100 Executive Blvd., Room 3C01
Bethesda, MD 20892-7511
Tel: 301-496-2563


Office of Disability Employment Policy

U.S. Department of Labor
Perkins Bldg., 200 Constitution Avenue, NW
Washington, DC 20210
Tel: 866-ODEP-DOL (633-7365); 877-889-5627 (TTY)


Office of Rare Disease Research

National Institutes of Health, DHHS
6100 Executive Blvd., Rm. 3A07, MSC 7518
Bethesda, MD 20892-7158
Tel: 301-402-4336


Paralyzed Veterans of America (PVA)

801 18th Street, NW
Washington, DC 20006-3517
Tel: 202-USA-1300 (872-1300); 800-555-9140
Fax: 202-785-4452

Non-profit organization dedicated to serving the needs of its members—more than 19,000 veterans paralyzed by spinal cord injury or disease, as well as caregivers and others affected by these disabilities—through advocacy, education, and research programs.


Parent Project Muscular Dystrophy (PPMD)

401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
Tel: 800-714-KIDS (5437)
Fax: 201-944-9987

Dedicated to ending Duchenne -- to accelerate research, advocate, demand optimal care for all young men, and educate the global community.


Parkinson Alliance

P.O. Box 308
Kingston, NJ 08528-0308
Tel: 609-688-0870; 800-579-8440
Fax: 609-688-0875

Raises and distributes money for the most promising research leading to a cure for Parkinson's disease. Partners with the Tuchman Foundation to ensure that every dollar donated by individuals and all net proceeds of events go directly to research. The Alliance is also devoted to improving quality of life within the DBS-STN community through an affiliated resource, www.DBS-STN.org.

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