Collects, stores, and distributes brain and other tissues for purposes of research to improve understanding, care, and treatment of individuals with developmental disorders.
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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Collects samples from patients with a variety of genetic and developmental disorders, patients with related disorders, and age-matched controls.
Provides support and resources for children and adults born with hemangiomas, port wine stains, and other vascular birthmarks.
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Non-profit organization that provides information and support to people with inner-ear balance disorders, including Meniere's disease and positional vertigo.
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Dedicated to improving the diagnosis, treatment, quality of life, and ultimately a cure for individuals and families affect by von Hippel-Lindau and other forms of cancer.
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International non-profit, volunteer-based organization whose mission is to provide emotional support to, raise consciousness about, and advocate for the spouses/partners of the chronically ill and/
Non-profit tax-exempt corporation that works to enrich the lives of individuals with characteristics of Williams syndrome.