We are so thankful to the National Lottery who have funded CDKL5 UK with an education grant in order to update our website and produce a number of fact sheets which will be coming in the months to come. CDKL5 UK set up in 2012 and we are delighted at how far we have come. We are involved in a number of activities at the moment within the research community but also with other associations in the UK and Europe which we now will make our presence in the world of rare disease stronger. We are expanding our scientific advisers who are able to provide valuable feedback and assistance when we are looking at potential areas of research in which to fund.
"In our shoes" is a blog series which is written by parents of children and adults living with CDKL5 disorder, we believe that parents are in a unique position to share experiences, tell their story whether it is their fears for the future, or to shout from the rooftops how well their child is doing.
We will be adding further content in the coming days so please bear with us, but we hope what we have so far is of interesting. Also, if you have a child or adult living with CDKL5 disorder or waiting diagnosis please see under living with CDKL5 and consider registering them, you can also keep upto date regarding research and clinical trials as and when they appear. The information will be kept completely confidential and will be stored on a secure server so that your information is safe.
For more information about how you can get involved with the blog, or become a CDKL5 Champion then please get in touch.