Supporting the UK Kabuki syndrome community since 2011.

Kabuki UK

Kabuki UK is a volunteer-driven charity founded by parents of children with Kabuki syndrome. We provide support, advice, information, grants and community events to families across the UK. Our goal is to raise awareness of Kabuki syndrome, support research and provide a welcoming place for all those affected by Kabuki syndrome.  

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What is Kabuki Syndrome?

Kabuki syndrome is a rare genetic disorder characterised by distinct facial features, developmental delays, and other congenital abnormalities.

Support Kabuki UK and Make a Difference

Kabuki UK relies entirely on the generosity of the community to fund our events and grant program. Every donation helps us support the Kabuki syndrome community by providing much needed medical equipment and creating unforgettable in-person experiences for people living with Kabuki syndrome and their families. 

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Kabuki UK Family Day

Our 2026 Family Day was so much fun, but now it’s over. You can read all about it and see pictures from the day here. Plans have already started for next year’s event – stay tuned for updates!

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Kabuki Syndrome Research

Ongoing research into Kabuki syndrome aims to uncover its mechanisms and develop potential treatments. Individuals affected by Kabuki syndrome are encouraged to participate in research to help advance these efforts. Kabuki UK supports global research initiatives through partnerships with institutions like the Manchester Rare Conditions Centre and the Kabuki Syndrome Foundation.

Kabuki UK Research
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Kabuki UK Information Day

On 16th March 2024, our Information Day brought together leading experts and advocacy groups, showcasing the UK’s role in advancing research and care; and providing parents with access to expert Kabuki syndrome clinicians.

Kabuki UK News