Patient Organizations

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.


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.


Cerebral Palsy Research Network

P.O. Box 8347
Greenville, SC 29604

National nonprofit organiztion to optimize the lifelong health and wellness of people with cerebral palsy and their families through high quality research, education and community programming.


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

4221 Forbes Boulevard
Suite 270
Lanham, MD 20706
Tel: 301-306-7070; 800-200-8098
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.


Child Neurology Foundation

201 Chicago Avenue, Suite 200
Minneapolis, MN 55415
Tel: 612-928-6325

Nonprofit advocacy organization committed to serving as a collaborative center of education and support for childrne and families living eith neurologic conditions.


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

1460 Broadway
New York, NY 10036
Tel: 212-448-9494; 866-228-4673
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.


Children's Gaucher Research Fund

8110 Warren Court
Granite Bay, CA 95746-2123
Tel: 916-797-3700
Fax: 916-797-3707

Grassroots non-profit organization that supports research efforts on Types 2 and 3 Gaucher disease.

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