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Events

The Kabuki Syndrome Foundation’s conferences, webinars, and fundraising events provide key community updates and drive our ability to find treatments.

Events for our scientific community, including monthly lab meetings, can be found here.

We look forward to seeing you soon!

Watch Our Latest Webinar

At our latest, live, global community webinar in July 2026, we shared:

Treatment development updates including vafidemstat and AI-powered drug screening
New resources that empower families and clinicians
What’s next for our global community
Live Q&A sessions

And 100% of surveyed attendees agreed, once again, that: “It was easy to follow the research and science information.”

We’re here to connect you – adults with Kabuki syndrome caregivers, friends, and professionals – to the science that can change lives.

Quest for a Cure Fundraising Gala

Save the Date: Monday, November 16, 2026 – we’re back in NYC for Quest for a Cure! Sign up below for email updates to be notified as details become available.

At our third annual fundraising gala in 2025, we raised more than $620,000 for research in a single night. Read more about the event and see the photos.

Since 2023, our galas have offered a blend of silent and live auctions, paddle raises, live entertainment, and real stories from families and scientists to galvanize support for finding treatments for Kabuki syndrome.

Interested in hosting a fundraising event with us? We’d love to hear from you.

Past Conference Recordings Available

Our virtual webinars and conferences bring together hundreds of families, researchers, clinicians and collaborators from around the world.

At least annually, we highlight the latest milestones in treatment development, share new resources, and empower our community to take action in pursuit of healthier futures for people impacted by Kabuki syndrome. We also host interactive panels of adults with Kabuki syndrome and clinical experts.

We routinely field more than 100 questions from live attendees and survey our community after each event to keep their priorities at the center of our programs.

Catch up on YouTube and join us live at our next event!

LEAP Webinar Series: The Roadmap to Treatments

We hosted 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 playlist 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, more than 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