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There was a query on 7/18 concerning ongoing research or places doing
research on this disorder. I checked my file and found research
studies in progress, specialists and support group information. I
would be happy to pass along this information. I will need the
snailmail address (some of the info is only available in hard copy).
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Sylvia Dickinson, R.N., M.S.N.
Coordinator Rare Disorder Network
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