We are sad to inform you that due to the uncertainties of COVID-19, our 5th International Family Education and Awareness Conference is postponed indefinitely.

This decision was tough for the Board to reach. So many of you have told us how much you look forward to the conference and we certainly feel the same. Even so, we have to make the safety of the CDKL5 Deficiency Disorder community our top priority. Although June is still a ways out, we felt we needed to make this decision now to allow you to seek refunds for airfare and other travel purchases you may have made. Please be reassured that we are working on alternative programming that will provide educational supports you are used to accessing at the conference, as well as creative ways to offer community support since we can not come together in person.

We will use Connect CDKL5 to keep families and caretakers in the loop about emerging plans for virtual conference sessions and new CDD resources. If you haven’t already, please connect with us at this link, so you don’t miss any notifications. We will also keep the event page updated for our extended community and partners to keep up to date. Please take a few moments to tell us what program topics would be most meaningful to you by completing this survey.

Thank you for your patience, understanding, and continued support. We know how much it means to come together as a community, and we hope to plan an in-person event when it is again safe for our community to gather.