www.kinderneurologie.eu

Hello! I stumbled on this webpage while researching further my daughters mutation to csnk2a1 that is now known as Okur-Chung Neurodevelopmental Syndrome or OKNDS. If found a webpage you have with information regarding it! Though I can not figure out how to get it translated into English. I only have a cheap tablet and it does ok, but I can not get it to even highlight information to try it in a translator. Does anyone have a way to get me the information from the web page so I can read it? Also if they have this information up does that mean anyone here has a child with this mutation? If you do I would LOVE to be in contact!!! As far as I know my daughter was one of the first 5 found to have this mutation and was one of the children in the paper. I have not tracted down the other 4 girls yet . But I have found 2 boys and one girl who have since had the diagnosis. So as far as I know this brings the total known kids up to 8. So if anyone has any information or help I would be very thankfull!!!!!!

Hi

My daugther got diagnosed with Okur-Chung just yesterday.
I think I found your Facebook group. Maybe that's an easier way to get in touch?

best regards,

Chantal

Hi There

We also have a son who has recently been identified as having the Okur-Chung syndrome and was part of a recent research paper. We have the paper, which is in English and would be more than willing to pass it on to you. As parents, its obviously very important to be able to educate ourselves regarding the syndrome. Frustratingly, as it's very newly discovered, there's little documentation around that is accessible. Sharing information between parents is perhaps the best way at the moment.

You may (or not) know that there is a Facebook page dedicated to the syndrome: 'Okur-Chung Neurodevelopmental Syndrom OCNDS'.
I'd say that was a very good place to start making connections to others. Feel free to contact us through this site too of course as not all of us are on Facebook.

Best Regards
Stephen

Hi
My kids And myself have the diagnos okur chung
IT is scary And strange but i hope some day that there is al lot of information about this