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.


Sotos Syndrome Support Association

P.O. Box 4626
Wheaton, IL 60189
Tel: 888-246-7772

Non-profit organization that offers an information clearinghouse and support network for families affected by Sotos Syndrome, or cerebral gigantism.


Spastic Paraplegia Foundation

1605 Goularte Place
Fremont, CA 94539-7241
Tel: 877-773-4483

Volunteer driven, non-profit organization dedicated to finding the cures for Hereditary Spastic Paraparesis (HSP) and Primary Lateral Sclerosis (PLS).


Spina Bifida Association

1600 Wilson Boulevard, Suite 800
Arlington, VA 22209
Tel: 202-944-3285; 800-621-3141
Fax: 202-944-3295

Non-profit association that provides information and referrals through a clearinghouse and toll-free number. Promotes research into the causes, treatment and prevention of Spina Bifida; conducts public awareness campaigns; and encourages socialization and training for people with Spina Bifida.


Spinal Muscular Atrophy Foundation

126 East 56th Street, 30th Floor
New York, NY 10022
Tel: 877-FUND-SMA (386-3762); 646-253-7100
Fax: 212-247-3079

Non-profit foundation dedicated to accelerating the development of a treatment or cure for SMA.


Sturge-Weber Foundation

P.O. Box 418
Mt. Freedom, NJ 07970
Tel: 973-895-4445
Fax: 973-895-4846

International non-profit organization established for support, referral, advocacy, and research into the management and cause of Sturge-Weber Syndrome (SWS). Also serves parents, professionals, and others concerned with Klippel-Trenaunay Syndrome and port wine stain.


Substance Abuse and Mental Health Services Administration

1 Choke Cherry Road
Rockville, MD 20857
Tel: 800-662-HELP (1-800-662-4357)

A nonprofit group whose mission is to advance research on chordoma, a type of tumor that grows in brain and spinal cord.


TBI Network

P. O. Box 121012
West Melbourne, FL 32912-1012

International support network, survivor founded and run, for traumatic brain injury. Focuses on positive communication between persons with brain injury, their family members, caregivers, and friends.


The Arc of the United States

1825 K Street, NW
Suite 1200
Washington, DC 20006
Tel: 202-534-3700; 800-433-5255
Fax: 202-534-3731

Promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.


The Bluefield Project to Cure Frontotemporal Dementia

637 Carolina Street
San Francisco, CA 94107
Tel: 650-208-3478

Raises awareness of and increases support to accelerate and fund research directed toward curing frontotemporal dementia (FTD).


The Charlie Foundation for Ketogenic Therapies

515 Ocean Avenue
Suite 602N
Santa Monica, CA 90402
Tel: 310-393-2347
Fax: 310-453-4585

Raises money for scientific research, education and public awareness of diet therapies for epilepsy. Offers education, programs, and materials for caregivers, dietitians, physicians and hospitals.

Pages