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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.
People Against Childhood Epilepsy (PACE)
[In 2011 Susan and Scott Fahey announced that " PACE will close its doors."] The Nonprofit was established as a research resource providing information and support to families of children with epilepsy.
Phelan-McDermid Syndrome Foundation
Pituitary Network Association
International non-profit organization for patients with pituitary disorders, their families, loved ones, and the physicians and health care providers who treat them.
PMD Foundation (Pelizaeus-Merzbacher disease)
Tax-exempt, nonprofit organization that serves families, researchers, and others affected by Pelizaeus-Merzbacher disease by supporting education, research, services, and advocacy programs.
Post-Polio Health International
Works to enhance the lives and independence of polio survivors and ventilator users through education, advocacy, research, and networking programs.
Prader-Willi Syndrome Association
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.
Preuss Foundation, Inc.[For Brain Tumor Research]
Provides forums for basic brain tumor researchers in an effort to increase communication and collaboration among them.
Project ALS
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.
Pseudotumor Cerebri Support Network
Non-profit organization that offers information and resources about PTC to people with the disorder.
Purine Research Society
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.
