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.


eParent.com

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.


Epilepsy Institute

257 Park Avenue South
New York, NY 10010
Tel: 212-677-8550
Fax: 212-677-5825

Non-profit organization that provides comprehensive social services and resources for people with epilepsy and their families.


Fabry Support & Information Group

108 NE 2nd Street, Suite C
P.O. Box 510
Concordia, MO 64020-0510
Tel: 660-463-1355
Fax: 660-463-1356

Non-profit support and information group that works to raise awareness of Fabry disease and its symptoms. Offers a variety of self-help, educational, and advocacy initiatives and programs in an effort to enhance identification, diagnosis, and treatment of Fabry disease.


Facial Pain Association

22 S.E. Fifth Avenue, Suite D
Gainesville, FL 32601
Tel: 352-384-3600; 800-923-3608
Fax: 352-331-3606

Non-profit organization that serves as an advocate for patients living with neuropathic facial pain, including trigeminal neuralgia, by providing information, encouraging research, and offering support.


Facial Pain Research Foundation

2653 SW 87th Drive, Suite A
Gainesville, Florida 32608-9313
Tel: 352-332-1653

Nonprofit organization that funds innovative research to end facial pain.


Facioscapulohumeral Muscular Dystrophy (FSH) Society

64 Grove Street
Watertown, MA 02472
Tel: 617-658-7877
Fax: 617-658-7879

Facilitates support groups, publishes a newsletter, organizes conferences and meetings, and awards research grants towards the prevention, cause and treatment of FacioScapuloHumeral muscular dystrophy worldwide. Provides public awareness of FSHD by providing information, referrals, education, and advocacy programs and services. Promotes collaborative research and collects and disseminates research information.


Familial Dysautonomia Foundation

315 W. 39th Street
Suite 701
New York, NY 10018
Tel: 212-279-1066
Fax: 212-279-2066

Non-profit organization that supports medical research grants and clinical care; provides information; and offers chapters nationwide and overseas.


Familial Dysautonomia Hope Foundation, Inc. (FD Hope)

121 South Estes Drive
Suite 205-D
Chapel Hill, NC 27514-2868
Tel: 919-969-1414

Non-profit organization that works to expand and accelerate research towards a cure for familial dysautonomia and to improve the lives of children and adults challenged by the disease. Funds research programs, provides a support network for patients and families, and promotes education and awareness in the medical community and public.


Family Caregiver Alliance/National Center on Caregiving

101 Montgomery Street
Suite 2150
San Francisco, CA 94004
Tel: 415-434-3388; 800-445-8106
Fax: 415-434-3508

Supports and assists families and caregivers of adults with debilitating health conditions. Offers programs and consultation on caregiving issues at local, state, and national levels. Offers free publications and support online, including a national directory of publicly funded caregiver support programs.

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