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Alexander's Disease is incredibly rare so probably does not have an established support group. Research centers and some of the organizations listed in the related links have support groups for leukodystophies in general and probably could put you in touch with other families affected by Alexander's.

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Q: Is there a support group for Alexander disease?
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The course of Alexander disease is generally one of regression and progressive neurologic degeneration. Prognosis varies according to the form of the disease.


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How Does Alexander disease affect lifestyle?

it doesnt


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Probably the best place to go would be there website. You can find it at www.celiac.org/ or http://www.celiac.com/articles/223/1/Celiac-Disease-Foundation---National-Celiac-Disease-Support-Group/Page1.html


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Most cases of Alexander disease are genetic, caused by a dominant mutation (change) in the glial fibrillary acidic protein (GFAP) gene on chromosome 17.


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