My CDKL5 Journey

In 2014 CDKL5 UK were awarded a National Lottery grant from the “Awards for All” programme.  The project title was “CDKL5 Education” the grant was to cover the re-design of our website, but also for a series of educational resources.  One such resource was the “My CDKL5 Journey” folders.  The folders resemble a health and social care passport.  It…

Rett Disorders Alliance

Some good news to share which we will hope will change the face of Rett and Rett-like disorders within the health and social care sectors in the UK. A collective voice creates stronger communities ‪#‎togetherwearestronger ‬‪#‎curecdkl5‬ Therefore we are delighted to announce the formation of the Rett Disorders Alliance of the UK. The Rett Disorders Alliance…