The Kabuki Syndrome Foundation’s Annual Research Conference and KSF Webinars are our key community touchpoints and fundraising events. In order to drive research that addresses our community’s greatest needs, we host events that directly speak to those needs and build connections amongst families and researchers. KSF brings the research to the community to make it more accessible and enable greater participation around the world. 

Conference recordings are now available on YouTube! Re-watch your favorite segment or catch up on anything you missed. You can also learn more about research recruitment flyers referenced during the event.

Watch KSF Events on YouTube

2023 Conference Registration is Open!

Join us live on Tuesday, November 7th to discover the critical role our community plays in accelerating treatments. At this year’s conference, discover how you can:

  • Meet an expert in-person. Gain insights into how Kabuki syndrome impacts learning and behavior and receive travel reimbursement, all while contributing to critical research.
  • Support research from home, from anywhere in the world. New and expanding opportunities mean more ways to support research that fit your family.
  • Learn from other families. Hear from families who have partnered with researchers to help unlock treatments and improve the lives of their loved ones.

PLUS, you’ll be able to ask questions LIVE and connect with expert researchers and clinicians, adults living with Kabuki syndrome, and our dedicated research team.

We’re thrilled to share that donations received between October 10 and November 10, 2023 will be matched up to $50,000! Help us spread the word and meet this generous match.

Register & Learn More

LEAP Webinar Series: The Roadmap to Treatments

We’re hosting a series of bite-sized webinars to unveil LEAP and the projects within this bold plan to unlock treatments on an accelerated timeline. Catch up on our YouTube channel.

In the second webinar of this series, our research team simplified the science behind Kabuki syndrome and how it relates to ongoing research and potential treatments. How do gaps in research prevent us from finding treatments? See how are we closing the gaps with the KSF Discovery Grant.

Watch: LEAP into LEARN

Highlights from KSF's 2022 Research Conference

At KSF’s latest Annual Research Conference, 450 families, researchers, and clinicians from 35 countries connected and interacted on our virtual platform. 15 researchers shared and discussed their latest research findings and initiatives, stimulating collaborations amongst researchers while engaging patient families in Kabuki syndrome research. A couple of our most popular segments were:

Researchers also shared an update on the ORYZON clincal trial, hosted deep dives into clinical management guidelines, immune system changes, low muscle tone, and much more. Thank you to all our panelists and speakers this year!

Watch KSF's 2022 Research ConferenceView the 2022 Conference Agenda

Why is Kabuki Syndrome Treatable?

Thankfully, we know that mutations in two genes can cause the symptoms of Kabuki syndrome. Researchers have shown that symptoms are treatable in mice.

KSF has a plan to drive research to treatments for all people with Kabuki syndrome.