How Many People Have Kabuki Syndrome? Preparing for Clinical Trials: Prevalence & Kabuki Count

[@MyKabukiGirl]

This is so interesting! Thank you for publishing the video: I rapidly scrolled the slides and when I saw the statistics of children in Italy I was astonished: we registered in the Kabuki count as living in Australia (where we migrated in 2013), but both me and daddy (parents of our Kabuki kid) are from Italy. Thank you for your continuous work, and the knowledge that you share; it helps Kabuki families so much!!

[@kabukisyndrome]

Thank you for watching and joining Count! We’re making progress every day thanks to the community’s support. Look for our next webinar and recording in May!

[@erikambeers]

So glad you opted to make the recording available! I was sorry I had to miss it. Cynthia and Clara’s comments about the lack of standardized data and other roadblocks sheds a lot of light on things and KSF’s push for ICD codes resolve some of that is really quite exciting! I’ll be anxiously awaiting the results of that process! Thanks very much for hosting the webinar and sharing this information.

[@kabukisyndrome]

You are very welcome! We look forward to sharing updates as we advance each initiative in LEAP. And we'll continue to add to our KZbin library to increase access to information. Thank you for your support!

[@ingabolandau5718]

Thank you very much for recording this session. A lot of precious information. We really appreciate all your support and commitment!

[@kabukisyndrome]

Thank you for your support and advocating for treatments!