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.


Antiepileptic Drug Pregnancy Registry

Massachusetts General Hospital
121 Innerbelt Road Room 220
Somerville, MA 02143
Tel: 888-AED-AED4 (233-2334)
Fax: 617-724-8307

Registry designed to determine what therapies are associated with increased risk of harmful fetal effects. Participation is confidential.


Aphasia Hope Foundation

P.O. Box 79701
Houston, TX 77279
Tel: 855-764-HOPE (855-764-4673)

Charitable foundation that works to increase the public's awareness of aphasia and the effective long-term treatments available to people with aphasia. Serves as a resource for families, friends, and caregivers.


Ara Parseghian Medical Research Foundation [For Niemann-Pick Type C Disease]

3530 East Campo Abierto
Suite 105
Tucson, AZ 85718-3327
Tel: 520-577-5106
Fax: 520-577-5212

Funds research projects that will lead to a treatment for Niemann-Pick Type C and other pediatric neurological diseases and cholesterol metabolism disorders.


Arthritis Foundation

P.O. Box 7669
Atlanta, GA 30357
Tel: 800-283-7800; 404-872-7100; 404-965-7888
Fax: 404-872-0457

Volunteer-driven organization that works to improve lives through leadership in the prevention, control, and cure of arthritis and related diseases. Offers free brochures on various types of arthritis, treatment options, and management of daily activities when affected.


Association for Frontotemporal Degeneration (AFTD)

Radnor Station Building #2 Suite 320
290 King of Prussia Road
Radnor, PA 19087
Tel: 267-514-7221; 866-507-7222

Nonprofit organization that promotes and funds research into finding the cause and cure for frontotemporal degeneration, also called frontotemporal dementia (FTD); provides information, education, and support to those affected by FTD and their caregivers; and sponsors professional health education programs related to FTD.


Association for Glycogen Storage Disease

P.O. Box 896
Durant, IA 52747
Tel: 563-514-4022
Fax: 563-514-4022

International not-for-profit organization that acts as a focus for individuals with glycogen storage diseases and their families. Works to foster communication between family members, professionals, and others for the purpose of support and information sharing.


Association for Science in Autism Treatment

P.O. Box 1447
Hoboken, NJ 07030

National not-for-profit, 501(c)3 organization formed by a group of parents and professionals concerned about the care and treatment of individuals with autism. ASAT is dedicated to disseminating accurate, scientifically valid information about autism and its treatment options.


Ataxia Telangiectasia (A-T) Children's Project

5300 W. Hillsboro Blvd.
Suite 105
Coconut Creek, FL 33073
Tel: 954-481-6611; 800-5-HELP-A-T (543-5728)
Fax: 954-725-1153

Non-profit organization that raises funds to support and coordinate biomedical research projects, scientific conferences, and a clinical center aimed at finding a cure for ataxia telangiectasia, a lethal childhood genetic disease.


Ataxia Telangiectasia (A-T) Medical Research Foundation

16224 Elisa Place
Encino, CA 91436
Tel: 818-906-2861
Fax: 818-906-2870

Non-profit organization that funds medical research seeking a therapy and ultimately a cure for ataxia-telangiectasia. 


Attention Deficit Disorder Association (ADDA)

P.O. Box 7557
Wilmington, DE 19083-9997
Tel: 800-939-1019
Fax: 800-939-1019

Non-profit organization focused on the needs of adults and young adults with ADD/ADHD, their children, and families.

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