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About CDKL5

We know how it feels to receive this diagnosis, and we are here to help.

We understand that this new diagnosis opens up a world of uncertainty, questions, and fears. You are not alone! You will find yourself among friends here, all with the common goal of helping our affected children and loved ones and finding a cure. We have created this list of Frequently Asked Questions that will be a good starting point for learning more about CDKL5.


Genetics & Epidemiology


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