Trusted connections
Resources & contacts
Start with established organizations, then confirm services and eligibility directly with each provider.
Kabuki Syndrome Network
Family-led education, connection, and advocacy.
Visit organizationKabuki Syndrome Foundation
Research support and resources for families.
Visit organizationNORD RareCare
Rare disease information and patient assistance navigation.
Visit organizationGenetic Alliance
Genetics support, advocacy, and community resources.
Visit organizationWatch & learn
Seminars 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.
K
Kabuki Syndrome FoundationOriginal publisher on YouTube
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.