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.


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.

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

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

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.<

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

Independent, not-for-profit citizen advocacy organization that works to promote medical research into human aging and to improve the health and independence of older Americans through public and pr

Non-profit charitable organization created by people affected by cavernous angiomas. Provides education and support and promotes research.

Nonprofit voluntary health organization dedicated to the fight against amyotrophic lateral sclerosis.

Founded in 1999, the ALS Therapy Development Foundation is dedicated to discovering and developing treatments for ALS.