Welcome to NeuroTalk:
These really rare disorders make it very difficult to find help.
I looked around and there is not much on the net either.
But this paper has an email, for one of the authors in UK...
If you use that email, and contact them, you may find a referral here closer to you that way. It is worth a try.
http://jnnp.bmj.com/content/79/2/202.abstract
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei
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Weezie looking at petunias 8.25.2017
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