Kabuki UK Family Day 2013 скачать в хорошем качестве

Kabuki UK Family Day 2013

Kabuki Syndrome is a very rare genetic condition which affects approximately 1 in 32,000 births worldwide.Kabuki Syndrome is complicated and has been underdiagnosed due to a lack of awareness amongst the medical profession. People with Kabuki Syndrome often have congenital heart defects, hypertonia, feeding difficulties, cleft palate, speech and language delay, hearing problems, learning difficulties and kidney abnormalities, to name just a few. Kabuki UK is a newly established charity which has been set up by a group of parents who all have children with Kabuki Syndrome. Each of us has been through the confusion, pain and heartache of a Kabuki Syndrome diagnosis. We have all experienced the isolation that comes from having a child with such a rare and complicated condition. Until now there was no UK-based organisation to support people with Kabuki Syndrome and their families. Although there are wonderful organisations in other countries their advice and experiences are often different to what we find here. Kabuki UK has been set up to address this problem. The website (www.kabukiuk.org.uk) has a wealth of information on the health, educational and developmental aspects of Kabuki Syndrome but is written in a reassuring way. There are lots of photographs of children with Kabuki Syndrome having fun with their friends and siblings. We are all now committed to establishing a support system for newly diagnosed families in the UK. Our network of regional contacts will provide a friendly support by phone, email and through family get togethers. We know that this charity will make a big difference because it already is.