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Support can be found in many areas and disciplines.  


It is easy to be overwhelmed with all that CDD has thrown at us and we may not even know what we need or where to begin our search.  From the very beginning of our journey, we have found that other families can light the way!  


So this support section will focus mostly on the connections with other families walking the same path.  Connections with families that are local, regional and international are truly invaluable!  


We hope you find a starting point here, but please reach out to us if you need additional resources or information, or simply a hand to hold.

Social Media:

Facebook has a large number of CDKL5 specific support groups, most of them are closed groups to protect privacy.   If you are interested in these groups, you can reach out to the moderator to request entry to the group.  There are too many to list here, and this list may change, so we are including only the main groups that are active and have been established over time.  There are also many state specific and country specific CDKL5 groups, so please check for any that are near you.

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