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My son has CESD

Hi everyone!
I'm a new member here and not sure I'm writing on the right page but still I hope I can get a feed-back.
I'm from Ukraine. My son (almost 6 years old) was diagnosed CESD. 1.5 years ago we were the first in our country, at the moment there are 6 patients in total. 
Can everyone tell me in what countries Kanuma is used already for treatment? What are the results? Do all the patients receive treating?

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