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White-Sutton syndrome

Brain & Nervous System | Last Active: Sep 29, 2023 | Replies (29)
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@rachelfromnl

Hi,

I am a mother form a 12-year old son in the Netherlands, who has a POGZ mutation.
I am not on Facebook, but would like to connect with more parents with children with the white-button syndrome.

Thank you, Rachel

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Replies to "Hi, I am a mother form a 12-year old son in the Netherlands, who has a..."
Colleen Young, Connect Director | @colleenyoung | Apr 19, 2018

Wilkom, Rachel,
While we wait for others to join you here on Connect, can you tell us a bit more about you and your son? How old was he when he was diagnosed with WSS? We look forward to getting to know you.

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pixelauthor | @pixelauthor | May 15, 2018

There seems to be several families finding this forum, but we are also starting a foundation to help White Sutton families. If you'd like to get updates, you can register your email address at http://www.whitesutton.org. There is also a community started on RareConnect at https://www.rareconnect.org/en/community/white-sutton-syndrome that we will be administering.

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