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.

Dravet Syndrome Foundation

P.O. Box 3026
Cherry Hill, NJ 08034
Tel: 203-392-1950

Dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions.

Dysautonomia International

P.O. Box 596
East Moriches, NY 11940

Organization  founded in 2012 by patients, caregivers, physicians and researchers dedicated to assisting people living with various forms of dysautonomia and increasing awareness of different medical conditions that cause a malfunction of a person's autonomic nervous system . More importantly, Dysautonomia International is dedicated to finding a cure and better treatments for each form of dysautonomia.

Dysautonomia Youth Network of America, Inc.

1301 Greengate Court
Waldorf, MD 20601
Tel: 301-705-6995
Fax: 301-638-DYNA

Nonprofit support and outreach network dedicated to serving youth diagnosed with various dysautonomia conditions. Provides peer and educational support, serves as a member forum for parents and youth, and sponsors a summer conference.

Dystonia Medical Research Foundation

One East Wacker Drive
Suite 1730
Chicago, IL 60601-1985
Tel: 312-755-0198
Fax: 312-803-0138

Non-profit medical research foundation that funds research, advances awareness, and provides education and support on dystonia, a movement disorder.

Easter Seals

141 Jackson Highway
Suite 1400A
Chicago, IL 60604
Tel: 800-221-6827
Fax: 312-726-1494

Provides services to help children and adults with disabilities and/or special needs as well as support to their families. Supports the National AgrAbility Project, a program for farmers, ranchers, and farm workers with disabilities.

Eldercare Locator

U.S. Department of Health and Human Services
Administration on Aging
Tel: 800-677-1116

Elizabeth Glaser Pediatric AIDS Foundation

1140 Connecticut Avenue, NW
Suite 200
Washington, DC 20036
Tel: 202-296-9165
Fax: 202-296-9185

Sponsors research programs, collaborative training initiatives, advocacy efforts, and international programs focused on pediatric AIDS and other serious and life-threatening diseases affecting children.

Environmental Protection Agency

1200 Pennsylvania Avenue, N.W
Ariel Rios Building
Washington, DC 20460
Tel: 202-272-0167

350 South Grand Avenue
Los Angeles, CA 90071
Tel: 800-EPARENT (372-7368)
Fax: 201-746-0179

Magazine that provides information, support, ideas, encouragement, and outreach for parents and families of children with disabilities and the professionals who work with them.

Epilepsy Foundation

8301 Professional Place West, Suite 230
Landover, MD 20785-2353
Tel: 301-459-3700; 800-EFA-1000 (332-1000)
Fax: 301-577-2684

National charitable organization dedicated to the welfare of people with epilepsy. Works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure. Offers a Legal Defense Program through a fund.