About Us
About Us
Last Updated on Thursday, 13 May 2010 11:24
Our community was born in May 2008 bringing together a number of families with children diagnosed with Kleefstra syndrome.
For the first year and a half or so it was a private support forum run by parents, for parents and associated medical professionals, to help bring together and share our experiences of having a child diagnosed with Kleefstra syndrome.
In April 2009 work was started on a website to sit along side the forum to provide public information on the condition along with a separate area for members. The website was launched in June 2009.
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 on 1st Jan 06 and diagnosed with Kleefstra syndrome at 1 year of age.
Any information provided on www.kleefstrasyndrome.org or our associated forum is designed to complement, not replace, the relationship between a patient and his/her own physician.
