There are only about 17 children diagnosed with a (recently found) PACS1 mutation so far around the world, my son and (at least) 2 other unknown children from the uk are in that 17.
I was wondering IF by any small chance any other parents of children with the diagnosis are on mumsnet and would like to get in contact?
We have a private group on facebook where we are in contact with about 11 other families around the world so far and we have found it a huge help as there is so little information about at present.
I am/my son is registered with unique and they can pass on my contact details if they have you registered with the same condition.
I would love to hear from other families and our PACS1 family can offer a lot of support.
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SN children
A crazy long shot but any children with a PACS1 mutation?
5 replies
imawigglyworm · 18/07/2014 22:22
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