2021 Virtual Research Conference October 22-23, 2021

We are excited to announce the return of the Annual Kabuki Syndrome Foundation Research Conference.  This virtual event supports several of our strategic initiatives; one of which is to bring together hundreds of patient families from around the world, researchers, clinicians, and biotechnology firms working on Kabuki Syndrome.  Event participation is free.  We hope to extend our reach even further this year in a virtual format. 


Program highlights include:

  • Leading Kabuki Syndrome researchers will present their latest findings and participate in a LIVE Q&A panel

  • AllStripes, an innovative medical data science company, will discuss rare disease drug discovery through their research platform

  • Oryzon Genomics, a leading pharmaceutical company, will present the potential of a small molecule drug for use in Kabuki Syndrome

  • Researchers will discuss empowering patients and understanding the role they play in discovery and basic research

  • Prioritizing research and creating a roadmap through community crowdsourced input

  • Global patient advocacy group recognitions followed by presentations and panel discussions

  • An inspirational panel discussion with young adults who have Kabuki Syndrome

This is a FREE event.

Individual registration is required. We are finalizing the agenda and will reach out to registrants with program updates.

Conference agenda (Coming Soon)
  • Kabuki Syndrome Research Conference

(Follow link to Conference Facebook Group)

2018 at Johns Hopkins University Hospital

Last year's conference once again brought together families from around the country and featured five of the leading clinicians and researchers involved with Kabuki Syndrome. Other topics included a review of the results from a patient/family survey done by Takeda Pharmaceutical Company.  

2015 at Johns Hopkins University Hospital


The first conference of its kind brought together Kabuki families to hear from several clinicians and researchers about the genetic underpinnings of Kabuki Syndrome, immunologic and neuro-developmental issues associated with the syndrome, and the status of current research efforts.