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This is page 1 of 1 (This thread has 5 messages.)
Here some suggested organisations that offer expert advice on SN.
Just found out my 1 year old has this rare syndrome. Does anyone have any experience with this?
my DD also has a rare genetic disorder.I found Facebook the most useful in connecting re her specific deletion. Have you checked if there is a 5p Facebook group? have you joined unique. Unique also has a Facebook group (but you can only join once you are a unique member).
I'll have a look now thanks x
hi. my sil has it. she is in her 40's. Do you know to what degree your dc has it?
Hello love. I have a 20 month old who has 5p- (cri du chat). There is a large support network on Facebook. Here is the link: m.facebook.com/groups/385907554759706?tsid=0.7719166437163949&source=typeahead
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