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.


460 Totten Pond Road, Suite 140
02451 MA

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.

P.O. Box 700248
78270 TX

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

600 Peachtree Parkway
Suite 108
30041 GA
Provides information and support to patients diagnosed with or treated for acoustic neuroma or other benign tumors affecting the cranial nerves.
12300 Twinbrook Parkway
Suite 350
20852 MD

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.<

P.O. Box 3202
60174 IL

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

750 17th Street, N.W.
Suite 1100
20006 DC
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 priv
1300 Wilson Boulevard
Suite 600
22209 VA

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

500 Office Center Drive
Suite 340
19034-3214 PA
300 Technology Square
Suite 400
02139 MA
Founded in 1999, the ALS Therapy Development Foundation is dedicated to discovering and developing treatments for ALS.
2000 Town Center
Susite 1900
48075 MI

Voluntary, non-profit foundation established to support children who are afflicted with AHC and their parents.