5th International CDKL5 Family Education & Awareness Conference


We have pivoted to a virtual event for our 5th International CDKL5 Family Education & Awareness Conference, in response to the COVID-19 pandemic.

This virtual event is a mix of livecast and pre-recorded presentations. We are delighted that so many of our speakers are able to participate! You will get the latest information on every aspect of CDKL5 Deficiency, from therapies to research. Here is a peek at those that made this all possible!


Live sessions take place on June 25th-27th on our YouTube Channel & via Facebook comments. The easiest way to ask questions is in the YouTube chat – you can also send questions to question@CDKL5.com or post to the Facebook Event stream. We will also continue to update this page as details become available including the information below.


  • Quality of Life & Home Supports
  • A Deeper Dive into CDKL5 Genetics
  • What’s New with CDD Research & Treatment Pipeline
  • CDKL5 Database Ecosystem
  • Updates on Phenotype/Genotype CDD Cases
  • International CDKL5 Clinical Research Network (ICCRN) & Current Clinical Research Landscape
  • Optimizing Existing Epilepsy Treatments
  • Virtual Tribute Celebration

Coming soon…


  • Medical
  • Therapy & Transition
  • Well-being & Quality of Life
  • Research Updates

Thank You to our Event Sponsors

*If you would like to learn how you can become a sponsor please email mchurgin@CDKL5.com

Trailblazing Sponsor:

Patient Impact Sponsor:

Focused Sponsor

Determination Sponsor

Collaborator Sponsors






Our event is hosted in association with

Previous Conferences

4th International CDKL5 Family Conference
3rd International CDKL5 Family Conference
2nd International CDKL5 Family Conference
Inaugural International CDKL5 Family Conference