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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.
Foundation that raises funds in support of research for ataxia telangiectasia.
Accelerated Cure Project for Multiple Sclerosis
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)
National non-profit that funds research and promotes public awareness of Pompe disease.
Acoustic Neuroma Association
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
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)
Agency for Toxic Substances and Disease Registry
Aicardi Syndrome Foundation
Information gathering and sharing resource for professional and health care personnel and Aicardi syndrome families. Sponsors a biennial conference.
Aicardi Syndrome Newsletter, Inc.
Newsletter published 2-3 times a year as a sharing resource and source of information for Aicardi Syndrome families.