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.

Myotonic Dystrophy Foundation

1004 O'Reilly Avenue
San Francisco, CA 94129
Tel: 86-MYOTONIC; 415-800-7777

The Myotonic Dystrophy Foundation (MDF) is the world’s largest patient organization focused solely on myotonic dystrophy. Their mission, “Care and a Cure,” is to enhance the quality of life of people living with myotonic dystrophy, and advance research focused on treatments and a cure.

Narcolepsy Network, Inc.

P.O. Box 2178
Lynwood, WA 98036
Tel: 888-292-6522; 401-667-2523
Fax: 401-633-6567

National, non-profit organization that sponsors education, awareness, and support programs.

National ALS Registry

4770 Buford Hwy NE
Atlanta, GA 30341
Tel: 800-232-4636

The National ALS Registry is a program to collect, manage, and analyze data about people with ALS in the United States. Developed by the Center for Disease Control and Prevention’s Agency for Toxic Substances and Disease Registry (ATSDR), this registry establishes information about the number of ALS cases, collects demographic, occupational and environmental exposure data from people with ALS to learn about potential risk factors for the disease, and notifies participants about research opportunities. The Registry includes data from national databases as well as de-identified information provided by individuals with ALS. All information is kept confidential. People with ALS can add their information to the Registry by visiting

National Aphasia Association

P.O. Box 87
Scarsdale, NY 10583
Tel: 212-267-2814; 800-922-4NAA (4622)
Fax: 212-267-2812

Promotes the care, welfare, and rehabilitation of people with aphasia through public education and support of research. Offers printed materials, a toll-free information hotline, a newsletter, and a listing of support groups.

National Association of Hospital Hospitality Houses

P.O. Box 1439
Gresham, OR 97030-4271
Tel: 800-542-9730; 503-328-9294
Fax: 828-253-8082

Non-profit corporation serving facilities that provide lodging and other supportive services to patients and their families when confronted with medical emergencies.

National Ataxia Foundation (NAF)

600 Highway 169 South
Suite 1725
Minneapolis, MN 55426
Tel: 763-553-0020
Fax: 763-553-0167

Encourages and supports research into the hereditary ataxias, a group of chronic and progressive neurological disorders affecting coordination. Sponsors chapters and support groups throughout the U.S.A. and Canada. Publishes a quarterly newsletter and educational literature on the various forms of ataxia.

National Brain Tumor Society

55 Chapel Street
Suite 200
Newton, MA 02458
Tel: 617-924-9997; 866-455-3214
Fax: 617-924-9998

Nonprofit organization committed to finding a cure for brain tumors; its mission is to aggressively drive strategic research, advocate for public policies that meet the critical needs of the brain tumor community, and provide trusted patient information.

National Cancer Institute (NCI)

National Institutes of Health, DHHS
6116 Executive Boulevard, Ste. 3036A, MSC 8322
Bethesda, MD 20892-8322
Tel: 800-4-CANCER (422-6237); 800-332-8615 (TTY)

National Center for Health Statistics (NCHS)

Centers for Disease Control and Prevention, DHHS
Division of Data Services, 3311 Toledo Road
Hyattsville, MD 20782
Tel: 301-458-4636; 866-441-NCHS (6247)

National Center for Learning Disabilities

1 Thomas Circle, N.W., #700
Washington, DC 20005
Tel: 212-545-7510; 888-575-7373
Fax: 212-545-9665

Provides information to parents, professionals and individuals with learning disabilities, promotes research and programs to foster learning, and advocates for policies to protect and strengthen educational rights and opportunities.