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The Society comprises 50+ volunteer-led local chapters and affiliates across the country with its headquarters in New York City. Additionally, HDSA hosts more than 200 support groups for people with HD, their families, caregivers and people at-risk, and is a resource on Huntington's Disease for medical professionals and the general public. [1]
It supports a network of regional care advisors who offer care and support to people with and at risk of Huntington's disease and their families. The HDA also has a research programme that supports scientific and social research into HD. [2] It has worked to establish and support a network of multidisciplinary clinics for HD patients in the UK. [3]
The Huntington's disease Outreach Project for Education at Stanford (HOPES) is a student-run project at Stanford University dedicated to making scientific information about Huntington's disease (HD) more readily accessible to patients and the public.
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Huntington's disease (HD), also known as Huntington's chorea, is an incurable neurodegenerative disease [7] that is mostly inherited. [8] The earliest symptoms are often subtle problems with mood or mental/psychiatric abilities. [9] [1] A general lack of coordination and an unsteady gait often follow. [2]
Healthcare reform advocacy groups in the United States are non-profit organizations in the US who have as one of their primary goals healthcare reform in the United States. These notable organizations address issues such as universal healthcare , national health insurance , and single-payer healthcare .
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Support groups maintain interpersonal contact among their members in a variety of ways. Traditionally, groups meet in person in sizes that allow conversational interaction. Support groups also maintain contact through printed newsletters, telephone chains, internet forums, and mailing lists. Some support groups are exclusively online (see below).
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