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.

RE Children's Project

79 Christie Hill Road
Darien, CT 06820
Tel: 917-971-2977

National organization devoted to increase awareness regarding Rasmussen's encephalitis (RE) for the primary purpose of supporting scientific research directed towards a cure.

Reflex Sympathetic Dystrophy Syndrome Association(RSDSA)

P.O. Box 502
99 Cherry Street
Milford, CT 06460
Tel: 203-877-3790; 877-662-7737
Fax: 203-882-8362

National not-for-profit organization that promotes greater public and professional awareness of RSD, a painful neurological syndrome. Raises funds for research and educates patients, their families and friends, insurance and healthcare providers, professionals, and the public.

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

Siegal Rare Neuroimmune Association

P.O. Box 826962
Philadelphia, PA 19182-6962
Tel: 855-380-3330

Nonprofit organization dedicated to advocacy for those who have rare neuroimmunologic diseases of the central nervous system, including transverse myelitis (TM), acute disseminated encephalomyelitis (ADEM), optic neuritis, and neuromyelitis optica (Devic's disease). Facilitates support and networking programs, offers educational materials, sponsors an information clearinghouse, and investigates, advocates for, and supports research and innovative treatment efforts. Offers a newsletter and an international membership directory.

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