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Global Kabuki Syndrome Census Reaches 1,379

Kabuki Count Q3 2025 Data Insights

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. Thanks to Kabuki Count, we are able to directly notify families who are potentially eligible for new research opportunities and future clinical trials.

Key Data Insights from the Q1 Kabuki Count Update:

  • 81 New Individuals Joined Count this Quarter
  • 1379 Total People with Kabuki Syndrome Have Joined Including:
    • 884 participants have Type 1 (a KMT2D mutation)
    • 203 participants have Type 2 (a KMD6A mutation)
    • 135 participants have a clinical diagnosis
    • 53 participants have a VUS on KMT2D or KDM6A

Explore more data, like sex and age of participants, and discover how we are empowering our global community to drive research to treatments. 

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!