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.


Children's Hemiplegia and Stroke Assocn. (CHASA)

4101 West Green Oaks Blvd., Ste. 305
PMB 149
Arlington, TX 76016
Tel: 817-492-4325

CHASA is a 501(c)(3) nonprofit organization dedicated to improving the lives of children and families affected by pediatric stroke and other causes of hemiplegia. Offers national family retreat, local family events and seminars, online support group, websites, fact sheets, clinical study information, and pediatric stroke awareness campaigns.


Children's Hydrocephalus Support Group, Inc.

P.O. Box 4236
Chesterfield, MO 63005-4236
Tel: 636-532-8228
Fax: 314-251-5871

Provides support and referrals and sponsors meetings and conferences.


Children's Tumor Foundation

120 Wall Street
16th Floor
New York, NY 10005
Tel: 800-323-7938; 212-344-6633
Fax: 212-747-0004

Non-profit medical foundation dedicated to improving the health and well being of individuals and families affected by the neurofibromatoses. Sponsors scientific research; promotes the development of clinical activities; develops public awareness programs; and provides support services and referrals for patients and families. Formerly known as the National Neurofibromatosis Foundation.


Christopher and Dana Reeve Foundation

636 Morris Turnpike
Suite 3A
Short Hills, NJ 07078
Tel: 973-379-2690; 800-225-0292
Fax: 973-912-9433

The Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.


Citizens United for Research in Epilepsy (CURE)

223 W. Erie
Suite 2 SW
Chicago, IL 60654
Tel: 312-255-1801; 800-231-2873
Fax: 312-255-1809

Non-profit grassroots organization formed by parents and families to raise funds for epilepsy research.


Clearinghouse on Disability Information

Special Education & Rehabilitative Services Communications & Customer Service Team
550 12th Street, SW, Rm. 5133
Washington, DC 20202-2550
Tel: 202-245-7307; 202-205-5637 (TTD)
Fax: 292024507636


Coalition for Safe Minds[Mercury Exposure Resource]

10807 Falls Road, Suite 1416
Brooklandville, MD 21022
Tel: 202-780-0921
Fax: 770-631-9380

Non-profit organization founded by parents to investigate and raise awareness of the risks to infants and children of exposure to mercury from medical products, including thimerosal in vaccines.


Coalition to Cure Calpain 3 (C3)

15 Compo Parkway
Westport, CT 06880
Tel: 203-829-9656
Fax: 734-668-4755

A voluntary health organization that provides support for promising research into finding treatments or a cure for limb-girdle muscular dystrophy, type 2A/calpainopathy (LGMD2A).


Cody Unser First Step Foundation

P.O. Box 56696
Albuquerque, NM 87187
Tel: 505-999-9550

Non-profit organization dedicated to raising research funds, public awareness, and quality of life for those afflicated with all forms of spinal cord-related paralysis. Focuses on the cause, rehabilitation, prevention, and cure for transverse myelitis.


Coffin-Lowry Syndrome Foundation

675 Kalmia Place, NW
Issaquah, WA 98027
Tel: 425-427-0939

Clearinghouse for information on CLS. Provides a general forum for exchanging experiences, advice, and information with other CLS families. Works to facilitate referrals of newly diagnosed individuals and to encourage medical and behavioral research in order to improve methods of social integration of CLS individuals.

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