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Support group for kids with PKD?

Thu, 03/03/2016 - 21:52
Hi all, my 2 (almost 3) year old son most likely has PKD (still trying to sort it out for sure, but it's looking likely). I'm curious - has anyone found any kind of support group for families of kids with PKD? Or even for adults with PKD? We've tried a first medicine (Trileptal) to see if his symptoms might respond, but so far no luck, even as we increase the dose. I'm curious to know what other families may have tried and what worked or didn't work for them. Thanks in advance!

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