Our ProgressOur goal is to find a therapy for Kabuki Syndrome

Bringing together the dream of Roya’s family and the dedication of the team at Boston Children’s Hospital sparked the creation of the Roya Kabuki Program. Holding the Kabuki Syndrome community at the heart of our efforts, we will make a positive impact in the lives of children and families across the world. Using a patient centered approach in the clinic, we strive to provide high-quality care to children with Kabuki Syndrome. We perform cutting edge research in the laboratory to further understand the underlying mechanisms of Kabuki Syndrome. As we integrate findings from both the clinic and the laboratory, we aim to raise awareness and education in both the medical and lay communities. Our ultimate goal is to develop specific therapies for patients with Kabuki Syndrome. This is our commitment to you, and we hope you’ll join us on this journey.

141 participants with Kabuki syndrome enrolled from around the world

Families in contact with Roya Kabuki Initiative
Families Enrolled
Total Individuals Enrolled (all KS kids, parents, siblings, etc.)

As of 12/08/2021