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
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.
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Nonprofit organization dedicated to advocacy for those who have rare neuroimmunologic diseases of the central nervous system, including transverse myelitis (TM), acute disseminated encephalomyeliti
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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
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Patient advocacy group dedicated to improving the lives of children and families affected by SLC6A1 and raising awareness and fundraising to advance scientific r
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Non-profit organization that offers an information clearinghouse and support network for families affected by Sotos Syndrome, or cerebral gigantism.
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Volunteer driven, non-profit organization dedicated to finding the cures for Hereditary Spastic Paraparesis (HSP) and Primary Lateral Sclerosis (PLS).
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Non-profit association that provides information and referrals through a clearinghouse and toll-free number.
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Non-profit foundation dedicated to accelerating the development of a treatment or cure for SMA.