Stay Updated on the Latest News and Research Efforts

Press Releases & Other News

Join Us.  Together we can advance Kabuki syndrome research.

By providing your email, you agree to receive emails on Kabuki syndrome research updates and opportunities, foundation news, event information, newsletters, and fundraising initiatives.  You can manage your email preferences at any time. 

14 June 2022: Kabuki Syndrome Foundation Awards $125,000 for Development of Neurological Assessment Tool for Clinical Trials

  • KSF granted the funds to Dr. Jacqueline Harris of Kennedy Krieger Institute, who is an established expert in neurodevelopmental disabilities including Kabuki syndrome.

3 May 2022: ORYZON Starts Preclinical Collaboration on Kabuki Syndrome with Kennedy Krieger Institute and Johns Hopkins University

  • KSF is working closely with Dr. Jacqueline Harris to prepare the Kabuki syndrome community for this clinical trial. We will share more details as they become available. 

28 February 2022: Kennedy Krieger Patient with Kabuki Syndrome Stars in Episode of ABC's 'The Good Doctor,' Spotlighting This Rare Disease

  • A Kennedy Krieger Institute physician and a longtime patient play important roles in an upcoming episode of the popular ABC-TV medical drama, “The Good Doctor.”

22-23 October 2021: Virtual Kabuki Syndrome Foundation Research Conference

  • Thanks to your generosity, we raised over $300,000 after matching contributions from 2 families!

  • Over 345 individuals from 20 countries logged into the event platform over the 2 day conference; our largest attendee record to date!

  • 16 researchers from top institutions shared the latest information on Kabuki syndrome research; 7 devoted and dedicated patient advocacy leaders highlighted their outreach programs; and 3 innovators from biotech showed us tremendous opportunities that exist in this space

  • 8 inspiring adults who have Kabuki syndrome shared their journeys and showed us that persistence and a positive mindset can lead to great achievements

27 September 2021: AllStripes + KSF Partnership is formed

  • As the leading research platform dedicated to rare diseases, AllStripes makes it easy for patients to contribute to new treatment studies from home.

21 September 2021: Oryzon announces $1 million grant from Kabuki syndrome philanthropists to support a precision medicine Phase I/II trial with Vafidemstat

  • HOPE will be the first clinical trial in precision medicine with vafidemstat in neurodevelopmental diseases

  • Multicentric study to assess the efficacy of vafidemstat in Kabuki Syndrome patients

  • Expected to start in early 2022

  • In collaboration with the Kennedy-Krieger Institute