Everyone involved with the running of this charity is a volunteer who has a child with Kabuki and so we understand better than anyone the worries that come with such a diagnosis.
Until 2012 there was no UK-based organisation to support people with Kabuki Syndrome and their families. Although there are wonderful organisations in other countries, their experiences are often different to what we find here. Kabuki UK was set up to address this problem.
We aim to raise awareness of this rare syndrome, provide advice and help to newly-diagnosed families and organise events that enable families all over the UK to share stories and have fun!
Please look around the website and if you have any queries or wish to become involved in Kabuki UK, please do get in touch.