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also listed as Congenital Suprabulbar Paresis;Supra Bulbar Paresis;Suprabulbar Palsy
I have found 36 people listed against this condition.
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A page for this condition is in the Contact a Family Directory, it may be able to help you further.
If a UK Support group is available for this condition you can access their details by clicking the above link, search for the condition and click on the "Is there support?" section.