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The Roya Kabuki Program at Boston Children’s Hospital is a multidisciplinary, patient-centered initiative for children and adults with known or suspected Kabuki syndrome. Although there are no targeted therapies yet for this genetic condition, coordination of clinical care and management improves health outcomes. We offer a medical home for Kabuki syndrome as well as opportunities to participate in research studies.

Boston Children’s Hospital established a Kabuki Syndrome Program in 2017 to integrate the care, management, and treatment of children and adults with Kabuki syndrome and to conduct research aimed at identifying targeted therapies. To learn more about the efforts of the Roya Kabuki Program and Roya’s story, please visit www.RoyaKabuki.org.

Our approach to Kabuki syndrome

Care for Kabuki syndrome is often fragmented, because it causes many different kinds of symptoms. Our team offers integrated, individualized inpatient and outpatient care, including access to world-renowned physician scientists in genetics, cardiology, developmental medicine, endocrinology, immunology, otalaryngology, ophthalmology, nephrology, nutrition, and physical therapy.

Clinical and scientific research on Kabuki syndrome are built into our program. You or your child will be invited to participate in studies and clinical trials as they become available. Learn about our research.

Our team also maintains close ties with a number of family support groups and patient advocacy groups that can provide you with additional support and helpful educational information.

For more information

For more information about the Roya Kabuki Program and any inquiries about participation for your child, contact us at 857-218-KBKI (5254) or email kabuki@childrens.harvard.edu.