Events

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.

We bring the latest research to our community and make it accessible to enable participation around the world. 

Watch KSF Events on YouTube

Live Webinar on May 9, 2024

Innovations in Diagnosing Kabuki Syndrome
featuring Dr. Hellen Lesmann, Institute of Human Genetics, University of Bonn

At our next live webinar, we are launching a global, AI-powered research opportunity that can make it easier for undiagnosed people to find their Kabuki syndrome diagnosis. A correct diagnosis leads to community, better medical recommendations, the ability to participate in clinical trials, and more. Your diagnosis matters and can even help others. 

Watch the recording to discover your role in shaping this AI and ask your questions live. Whether you have a genetic or clinical diagnosis, VUS, or have questions, we have the tools for you. 

Improving how people are diagnosed with Kabuki syndrome is part of LEAP, our roadmap to treatments. Helping more people find their diagnosis is one way we are preparing for clinical trials and showing our strength in numbers. You’re invited to join us live and help make the LEAP to treatments!

Inaugural Fundraising Gala

In a remarkable display of support, the “Quest for a Cure” fundraising gala for Kabuki syndrome raised over $500,000! This inaugural, local event brought together a sold-out crowd of 300 supporters at City Winery in New York City on November 30, 2023. An evening of live entertainment, dinner, silent and live auctions, and a paddle raise proved to be a powerful force in finding treatments for Kabuki syndrome. Thank you to every supporter and the event chairs for making this first event a resounding success! 

Quest for a Cure

LEAP Webinar Series: The Roadmap to Treatments

We’re hosting a series of bite-sized webinars to unveil the projects within LEAP, our bold plan to unlock treatments on an accelerated timeline. 

Each inspiring video of this playlists features experts answering our community’s thoughtful questions live. Dive into LEAP and discover the key role you play as we unlock the brightest futures possible for people affected by Kabuki syndrome. 

Watch Now: The LEAP to Treatments

Highlights from Our 2023 Research Conference

At our latest annual conference, over 400 families, researchers, and clinicians from 38 countries connected and interacted on our virtual platform. This half-day event was filled with pivotal progress updates and energizing calls to action, including: 

Thank you to all our panelists and speakers for sharing your milestones and inspiring us to keep advocating for Kabuki syndrome research!

Watch Now: 2023 Research Conference

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.