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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.
Research!America
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
Resource for information, publications, and training programs that enable people with disabilities and chronic conditions to remain independent.
Restless Legs Syndrome Foundation
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.
Siegal Rare Neuroimmune Association
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
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
Sotos Syndrome Support Association
Non-profit organization that offers an information clearinghouse and support network for families affected by Sotos Syndrome, or cerebral gigantism.
Spastic Paraplegia Foundation
Volunteer driven, non-profit organization dedicated to finding the cures for Hereditary Spastic Paraparesis (HSP) and Primary Lateral Sclerosis (PLS).
Spina Bifida Association
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.