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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.
International non-profit organization for patients with pituitary disorders, their families, loved ones, and the physicians and health care providers who treat them.
Tax-exempt, nonprofit organization that serves families, researchers, and others affected by Pelizaeus-Merzbacher disease by supporting education, research, services, and advocacy programs.
Serves as an international vehicle of communication about Prader-Willi syndrome (PWS), a genetically based developmental disability. Provides to parents and professionals a national and international network of information, support services, and research endeavors to meet the needs of affected children and adults and their families.
Not-for-profit organization that raises awareness and significant funds toward effective treatments and a cure for ALS, also known as Lou Gehrig’s disease.
National nonprofit organization that supports DNA research and the search for mutations in nuclear and mitochondrial DNA that might cause autistic symptoms or autistic/epileptic symptoms in patients. Offers publications and reference information, including a purine-restricted diet.