managed by C. Werdermann (Communication)
CDKL5 UK is a UK based charity that has been set up to raise awareness and vital funds for the global research effort concerning the CDKL5 genetic disorder. The trustees of CDKL5 UK are made up of parents living with a child with CDKL5 as well as family and friends who all share the same goal. Currently there are thought to be in excess of 50 children and adults, predominately female in the UK living with a diagnosis of CDKL5.
The worldwide figure is believed to be in excess of 700. CDKL5 UK is working with and in support of the International Foundation for CDKL5 based in the USA, and other foundations across the world. It is through this collaboration that CDKL5 UK are able to support credible research which is already happening across the world through aggressive fundraising.