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.

A-T Ease Foundation, Inc.

217 Thompson Street
Suite 404
New York, NY 10012
Tel: 212-529-0622
Fax: 212-505-8031

Foundation that raises funds in support of research for ataxia telangiectasia.

Accelerated Cure Project for Multiple Sclerosis

460 Totten Pond Rd. Suite 420
Waltham, MA 02451
Tel: 781-487-0008
Fax: 781-487-0009

National nonprofit organization dedicated to accelerating efforts toward a cure for MS. Researchers have access to online resources and the ACP Repository of highly characterized biosamples.

Acid Maltase Deficiency Association (AMDA)

P.O. Box 700248
San Antonio, TX 78270
Tel: 210-494-6144
Fax: 210-490-7161

National non-profit that funds research and promotes public awareness of Pompe disease.

Acoustic Neuroma Association

600 Peachtree Parkway
Suite 108
Cumming, GA 30041
Tel: 770-205-8211; 877-200-8211
Fax: 770-205-0239/877-202-0239

Provides information and support to patients diagnosed with or treated for acoustic neuroma or other benign tumors affecting the cranial nerves.

ADA Disability & Business Technical Assistance Program

401 North Washington Street
Suite 450
Rockville, MD 20805
Tel: 800-949-4232; 301-217-0124
Fax: 301-217-0754

Provides information, guidance and training on the Americans with Disabilities Act (ADA), tailored to meet the needs of business, government and individuals at local, regional and national levels.

Agency for Healthcare Research and Quality (AHRQ)

P.O. Box 8547
Silver Spring, MD 20907-8547
Tel: 703-437-2078; 800-358-9295

Agency for Toxic Substances and Disease Registry

Centers for Disesase Control and Prevention, DHHS
1600 Clifton Rd. MS E-29
Atlanta, GA 30333
Tel: 404-498-0110; 800-232-4636
Fax: 404-498-0093

Aicardi Syndrome Foundation

P.O. Box 3202
St. Charles, IL 60174
Tel: 800-374-8518

Information gathering and sharing resource for professional and health care personnel and Aicardi syndrome families. Sponsors a biennial conference.

Aicardi Syndrome Newsletter, Inc.

1510 Polo Fields Court
Louisville, KY 40245
Tel: 502-244-9152

Newsletter published 2-3 times a year as a sharing resource and source of information for Aicardi Syndrome families.

AIDSInfo (AIDS Information Service)

P.O. Box 4780
Rockville, MD 20849-6303
Tel: 800-HIV-0440 (448-0440); 888-480-3739 (TTY)
Fax: 301-315-2818

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