If you are a parent or family member of a child that has just been diagnosed, you are at the right place. We will help you through this difficult time. We know exactly what you are going through. We understand your struggles and your journey to this point. We also know that this new diagnosis opens up another world of uncertainty, questions and fears.
You are not alone anymore. You will find yourself amongst friends here, all with the common goal of helping our children and finding a cure. We have created a list of Frequently Asked Questions that will be a good starting point for learning more about CDKL5, and we invite you to read the welcome letters from families also affected by this disorder.
We are here for you!