A global organization dedicated to Awareness, Education & Support for Neonatal & Pediatric Acquired Hypoxic Ischemic Encephalopathy (HIE).
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.
Provides information and support to hypothalamic hamartoma (HH) patients, caregivers, and healthcare providers and promotes research toward early detection, improved treatments, living with HH, and
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Voluntary, non-profit organization dedicated to helping medical science better understand the process of growth.
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Fosters awareness about Krabbe disease and other leukodystrophies, works to promote early detection through newborn screening, provides information and service linkages to families, and funds resea
Dedicated to finding a cure for Huntington’s Disease while providing support and services for those with HD and their families.
Non-profit association that provides support, education, and advocacy programs for families and professionals and is the largest private funder of hydrocephalus research in the United States.
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The Hypersomnia Foundation strives to improve the lives of people with hypersomnia by advocating on their behalf, providing support, educating the public and healthcare professionals, raising aware
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I AM ALS is a patient-led community that provides critical support and resources to those living with ALS, caregivers and loved ones.
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Funds scientific research for treatments and a cure for infantile neuroaxonal dystrophy and other forms of PLA2G6-related neurodegeneration.