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.


Center for Scientific Review

National Institutes of Health, DHHS
6701 Rockledge Drive, MSC 7768
Bethesda, MD 20892-7768
Tel: 301-435-1115


Centers for Disease Control and Prevention (CDC)

U.S. Department of Health and Human Services
1600 Clifton Road
Atlanta, GA 30333
Tel: 800-311-3435; 404-639-3311; 404-639-3543


Centers for Medicare and Medicaid Services (CMS)

U.S. Department of Health and Human Services
7500 Security Blvd.
Baltimore, MD 21244-1850
Tel: 410-786-3000; 877-267-2323


Cerebral Palsy Foundation

3 Columbus Circle, 15th Floor
New York, NY 10019
Tel: 212-520-1686
Fax: 917-599-0431

Dedicated to funding research and educational activities relevant to discovering cause, cure, and evidence based care for individuals with CP and related developmental disabilities.


CHADD - Children and Adults with Attention-Deficit/Hyperactivity Disorder

4601 Presidents Drive
Suite 300
Lanham, MD 20706
Tel: 301-306-7070; 800-233-4050
Fax: 301-306-7090

Works to improve the lives of people affected by attention-deficit/hyperactivity disorder (AD/HD) through collaborative leadership, advocacy, research, education, and support and offers the National Resource Center on AD/HD at www.help4adhd.org.


Charcot-Marie-Tooth Association (CMTA)

P.O. Box 105
Glenolden, PA 19036
Tel: 800-606-CMTA (2682)
Fax: 610-499-9267

Provides education and support to persons with Charcot-Marie-Tooth disorders, their families, and the health professionals who treat them.


Chiari & Syringomyelia Foundation

29 Crest Loop
Staten Island, NY 10312
Tel: 718-966-2593
Fax: 718-966-2593 (Call First)

Nonprofit organization committed to disseminating accurate and current information about treatments for and best practices surrounding the management of Chiari malformation, syringomyelia & related cerebrospinal fluid disorders.


Childhood Brain Tumor Foundation

20312 Watkins Meadow Drive
Germantown, MD 20876
Tel: 877-217-4166; 301-515-2900

Non-profit organization that raises funds for scientific and clinical research to improve both prognosis and quality of life for those affected by pediatric brain tumors. Works to heighten public awareness and provides information and resources for families and patients.


Children's Brain Tumor Foundation

274 Madison Avenue
Suite 1004
New York, NY 10016
Tel: 212-448-9494; 866-CBT-HOPE (228-4673)
Fax: 212-448-1022

Works to improve the treatment, quality of life, and long-term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy programs.


Children's Craniofacial Association

13140 Coit Road
Suite 517
Dallas, TX 75240
Tel: 800-535-3643; 214-570-9099
Fax: 214-570-8811

Non-profit organization dedicated to improving the quality of life for people with facial differences and their families.

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