How Many People Have Kabuki Syndrome? Updating Data from 1988

updating kabuki syndrome prevalence, live webinar, kabuki syndrome foundation

Webinar Recording on Kabuki Syndrome Prevalence Now Available!

Watch now in our YouTube library:

Updating the prevalence of Kabuki syndrome is key to preparing for successful clinical trials that unlock life-changing treatments. Prevalence can be simply defined as how many people have Kabuki syndrome. The most commonly cited statistic of 1:32,000 is from 1988 – before the genes that cause Kabuki syndrome were discovered! Now is the time to make sure Kabuki syndrome data doesn’t stay in the past.

Join Our Live Webinar on Tuesday, March 5 with Expert Epidemiologist

Dive into the status of Kabuki syndrome prevalence with Dr. Cynthia Willey and the KSF team at our next webinar. We’ll uncover:

  • How 1:32,000 was calculated in 1988
  • Why we need updated data now
  • Who we’re collaborating with to unlock new tools
  • Where Prevalence fits into LEAP and accelerating treatments

Register for this free webinar and join us live to ask the experts your questions. Registrants will also be notified when the recording becomes available.

LEAP to Treatments this Leap Year

Our active community donated over $50,000 last year to help Prepare for Clinical Trials! With your support, we have:

  • Worked with an expert epidemiologist to understand current prevalence data and gaps;
  • Recruited 850+ individuals to participate in Kabuki Count, the global patient census and contact registry;
  • Identified the tools our community needs to ensure Kabuki syndrome prevalence can be updated; and
  • Hosted over 400 families at our virtual events and provided resources that empower participation.

We’ve identified the next crucial steps in preparing for trials and are thrilled to unveil them at our next engaging webinar. Dive into this project within LEAP, our roadmap to treatments for Kabuki syndrome. With your help, we are on our way to raising the $200,000 needed to successfully prepare for trials and create meaningful treatment options for people with Kabuki syndrome.

Your gift can help unlock not only accurate data on how many people have Kabuki syndrome, but we can create the lasting tools that ensure Kabuki syndrome data doesn’t get stuck in the past. With more ways to give than ever, including tax-relief for donors in the UK and Canada, we can find treatments that change lives together. Donate today.