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.

Rehabilitation International

806 United Naitons Plaza
Office 422
New York, NY 10007
Tel: 212-420-1500
Fax: 212-505-0871

Global network of people with disabilities, service providers, researchers, government agencies, and advocates promoting and implementing the rights, inclusion, and rehabilitation of people with disabilities.


241 18th Street South
Suite 501
Arlington, VA 22202
Tel: 703-739-2577
Fax: 703-739-2372

Research!America is the nation's largest 501(c)(3) public education and advocacy alliance working to make research to improve health a higher national priority. Founded in 1989, Research!America is supported by 400 member institutions, businesses and organizations that together represent the voices of more than 125 million Americans. Our public opinion polls, advocacy programs and publications reach the public and decision makers to help advance medical, health and scientific research.

Resources for Rehabilitation

22 Bonad Road
Winchester, MA 01890
Tel: 781-368-9094
Fax: 781-368-9096

Resource for information, publications, and training programs that enable people with disabilities and chronic conditions to remain independent.

Restless Legs Syndrome Foundation

3006 Bee Caves Road
Suite D206
Austin, TX 78746
Tel: 512-366-9109

Provides educational materials on restless legs syndrome and related disorders to individuals, their families, physicians, healthcare providers and supports medical research into the cause and cure for restless legs syndrome.

Rett Syndrome Research Trust

67 Under Cliff Road
Trumbull, CT 06611
Tel: 203-445-0041

Sjogren's Syndrome Foundation

1071 Parkridge Boulevard, Suite 170
Reston, VA 20191
Tel: 800-4-SJOGREN (475-6473)
Fax: 301-530-4415

National nonprofit organization of patients, caregivers, and healthcare providers dedicated to support, education, and the stimulation of research toward better treatments and a cure for Sjogren's syndrome.

Social Security Administration

6401 Security Blvd.
Windsor Park Building
Baltimore, MD 21235
Tel: 410-966-3000; 800-772-1213; 800-325-0778 (TTY)
Fax: 410-965-0696

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.