About Us

Our community was born in May 2008 bringing together a number of families with children diagnosed with Kleefstra syndrome.

We are not classed as a charity or organisation of any type. We are simply a resource for anyone with an interest in this rare diagnosis.  

We do not receive any funding from any source what so ever and the website was created and is maintained by our members Chris & Fiona Heslehurst, who are the proud parents of Leah and Lucas.  Leah was born in 2006 and diagnosed with Kleefstra syndrome at 1 year of age.

Any information provided on this website or our associated forum is designed to complement, not replace, the relationship between a patient and his/her own physician.



Additional information