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SEN Web Links : Kabuki Syndrome


 

 

About Kabuki Syndrome

Recommended Links

Kabuki Syndrome is a rare genetic condition affecting up to 1 in 30000 births. It is so named as the facial appearance of individuals with the condition resembles that of the make-up worn by Japanese Kabuki Actors.

Kabuki syndrome is associated with mild to moderate learning disabilities.

The condition causes a deformation of the palate which can accentuate developmental speech delay.

50% of children with Kabuki Syndrome have hearing impairment.

Many children with the syndrome are also affected by epilepsy.

  • Kabuki Syndrome Network
    The KSN is an online support organisation based in the Netherlands but with an international focus.
     
  • CAF - Kabuki Syndrome
    Contact a Family is a UK charity which supports families of children with rare disorders
     
  • OMIM Reference
    Reference pages from OMIM on Kabuki Syndrome includes links to mainly clinical papers.
     
  • Jakob's Homepage
    Family perspective from this journal about Jakob who has Kabuki Syndrome.
     
  • SAKKS
    An Australian support site for those affected by Kabuki Syndrome. A developing site with useful information including personal stories and case studies.