Global Kabuki Syndrome Census Reaches 1,237 Individuals!
Each quarter, we provide an update that shows our census growth & data insights from Kabuki Count.
Kabuki Count is the global Kabuki syndrome census and contact registry designed to drive research to treatments for Kabuki syndrome. For example, The Kabuki Syndrome Foundation is able to directly notify Kabuki Count participants who are potentially eligible for new research opportunities and future clinical trials.
Key Data Insights from the Q1 Kabuki Count Update:
- 41 New Individuals Joined Count this Quarter
- 1237 Total People with Kabuki Syndrome Have Joined Including:
- 790 participants have Type 1 (a KMT2D mutation)
- 180 participants have Type 2 (a KMD6A mutation)
- 120 participants have a clinical diagnosis
Explore more data, like sex and age of participants, and discover how we are empowering our community to drive research to treatments. A global collection of 11 patient advocacy groups, led by the Kabuki Syndrome Foundation, help activate the global Kabuki syndrome community. The Kabuki syndrome census was launched on October 23, 2023, Kabuki Syndrome Awareness Day.
If you have Kabuki syndrome or are a caregiver for someone with Kabuki syndrome, join Kabuki Count by filling out a simple, three-minute form. It’s the fastest way for you to empower research and be aware of new treatment opportunities. And if you’ve already joined, we invite you to share this opportunity and help our community continue to grow.
Kabuki Count is available in English, French, and Spanish. Be Counted Today!