The Dysautonomia Treatment and Evaluation Center is maintained and supported by the Dysautonomia Foundation, a nonprofit organization founded in 1951, through its 16 local chapters throughout the United States, Canada, and Great Britain. The Center specializes in the diagnosis and treatment of familial dysautonomia, although they will respond to inquiries on other pediatric patients suspected of having a variant of this disorder or another of the congenital sensory neuropathies. While its primary goal is treatment, data on specific manifestations are accumulated and stored. The Center has a 24-hour telephone answering service and will make referrals. At present over 400 patients with familial dysautonomia are registered. The prevalence rate is one in 3,600 people of Ashkenazi Jewish extraction.
The Center offers reprints of several papers on various aspects of dysautonomia, as well as manuals on care and treatment of this disorder.
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