Resources & Support

The diagnosis of CDKL5 can be very overwhelming.  We have listed several resources on the right of this page to help you learn more, get in touch with other families, and begin to help us spread awareness about CDKL5 to others.



We would like ton announce the launch of a NEW searchable CDKL5 database  in partnership with Telethon Kids in Australia.

Once on the page, scroll down and click the pie graph on the right side of the page.

This searchable database allows you to explore various clinical areas and look at frequencies by age and mutation group.

This will also be an important resource for your child’s doctors, for many of whom your child may be their only patient. Please feel free to share with your own and other families, clinicians and therapists.

Clicking on ‘Home’ at the top of the database will return you to the Telethon Kids website, which contains links to recent publications that may also be of interest both to you and your child’s doctors.

This is only the beginning! More to come…