Kabuki syndrome is a rare disease that can impact every part of the body, every day of a person's life.

It's caused by a change in a person's DNA that they are born with. Symptoms are managed as they appear, which can be at birth or later in life. Physicial, occupational, speech, and feeding therapies are often needed for year and sometimes into adulthood. Adults with Kabuki syndrome often require lifelong support to manage daily living activies and their multiple medical concerns.

There are no approved treatments specifically for people with Kabuki syndrome. 

Founded in 2018, the Kabuki Syndrome Foundation drives research toward treatments, advances clinical care, and creates trusted resources for families affected by Kabuki syndrome around the world.

We have invested more than $2.8 million in research to accelerate the development of transformative treatments and bring them closer to the families who need them most. Over 1,500 families with Kabuki syndrome are registered in our global census and have access to expert-approved resources, live events, and support year-round. 

Families’ priorities are at the center of our work, and the tools we create empower them to advocate for the highest quality care.

99.8% of donations to the Kabuki Syndrome Foundation have come from those who love someone with Kabuki syndrome. We are a global community making treatments and brighter futures possible. We hope you'll join us.

The information provided here is for general informational purposes only and is not intended as medical advice, diagnosis, or treatment.