Resources & contacts
Start with established organizations, then confirm services and eligibility directly with each provider.
Kabuki Syndrome Clinics & Partners
Foundation-maintained directory of Kabuki syndrome clinics and specialists in the United States and internationally.
Visit organizationKabuki Syndrome Network
Family-led education, connection, and advocacy.
Visit organizationKabuki Syndrome Foundation
Research support and resources for families.
Visit organizationAll Things Kabuki: Health Issues
Community-authored overview of commonly discussed health issues. Confirm medical details with a qualified clinician.
Visit organizationMedlinePlus Genetics
U.S. National Library of Medicine overview of Kabuki syndrome, genetics, and inheritance.
Visit organizationNORD RareCare
Rare disease information and patient assistance navigation.
Visit organizationGenetic Alliance
Genetics support, advocacy, and community resources.
Visit organizationSeminars from the Kabuki community
Hear updates and live questions directly from the Kabuki Syndrome Foundation. Videos are educational resources and do not replace individualized medical care.
Preparing for an appointment?
Write down changes you have noticed, current medicines, and your top three questions. Ask whether a genetics counselor or relevant specialist should be part of the care team.