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 Shingles Foundation[For Research on Varicella Zoster]

603 W. 115 Street
Suite 371
New York, NY 10025
Tel: 212-222-3390
Fax: 212-838-0380

Non-profit organization solely combating VZV infections: chickenpox, shingles and post-herpetic neurgalia (PHN). Supports research that may lead to a better understanding of VZV infections and to advances in their prevention, treatment and cure.


National Sleep Foundation

1010 N. Glebe Road
Suite 420
Arlington, VA 22201
Tel: 703-243-1697
Fax: 202-347-3472

National nonprofit organization that works to improve public health and safety by promoting public understanding of sleep and sleep disorders. Supports sleep-related education, research, and advocacy; produces and distributes educational materials to the public and healthcare professionals; and offers postdoctoral fellowships and grants for sleep researchers.


National Spasmodic Dysphonia Association

300 Park Boulevard
Suite 415
Itasca, IL 60143
Tel: 800-795-NSDA (6732)
Fax: 630-250-4505

Works to advance medical research into the causes of and treatments for spasmodic dysphonia; promotes physician and public awareness of the disorder; and sponsors support groups for patients and their families.


National Spasmodic Torticollis Association

9920 Talbert Avenue
Fountain Valley, CA 92708
Tel: 714-378-9837; 800-487-8385

Non-profit organization formed to give information and support to people with spasmodic torticollis (ST), also known as cervical dystonia. Offers an outreach program designed to increase awareness of the disorder. Chapters are located nationwide.


National Tay-Sachs and Allied Diseases Association

2001 Beacon Street
Suite 204
Boston, MA 02135
Tel: 617-227-4463
Fax: 617-277-0134

The mission of the National Tay-Sachs & Allied Diseases Association is to lead the fight to treat and cure Tay-Sachs, Canavan and related genetic diseases and to support affected families and individuals in leading fuller lives.


National Vaccine Injury Compensation Program

Health Resources and Services Administration, DHHS
Parklawn Bldg., 5600 Fishers Lane
Rockville, MD 20857
Tel: 301-443-6593; 800-338-2382


National Vulvodynia Association

P.O. Box 4491
Silver Spring, MD 20914-4491
Tel: 301-299-0775
Fax: 301-299-3999

Non-profit organization created in 1994 to improve the lives of individuals affected by vulvodynia, a spectrum of chronic vulvar pain disorders.


NBIA Disorders Association

2082 Monaco Court
El Cajon, CA 92019-4235
Tel: 619-588-2315
Fax: 619-588-4093

Dedicated to providing assistance to families affected by neurodegeneration with brain iron accumulation (formerly called Hallervorden-Spatz Syndrome) through support for research and educating the public.


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.

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