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Glyn's Gift

The beginnings of CDKL5
Our Next Event

5th Annual Give Charlie a Chance

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Rare Disease Day Rally in Austin, TX

The IFCR celebrated Rare Disease Day with a rally at the State Capital of Austin, ... Learn More

GoodSearch: You Search...We Give!

The IFCR is a proud partner of NORD

Tim Benke, MD, PhD
Tim Benke, MD, PhD is the Ponzio Family Endowed Chair in Neurology Research at University of Colorado/Children’s Hospital Colorado.

CDKL5 Disorder - An Introductory Guide

Centers of

Now you can be a part of Research!
Announcing The CDKL5 International Registry Database

There is always a supply of hope on hand here! Welcome to the International Foundation for CDKL5 Research. This site is dedicated to anyone who is affected by CDKL5. We hope that through this site, no family will ever again have to face this diagnosis alone. We are here to welcome you, bring encouragement, educate and give you a place where you can find answers, understanding, and a sense of family, strength and peace. Together, we will find a cure!

We invite you to explore the site and keep checking back as new information will be coming fast and we will constantly be updating with new information.

Watch our new Hope, Love, Cure research campaign video.

CDKL5 Supporting Organizations

CDKL5 UK CDKL5 Itlay CDKL5 Itlay CDKL5 Canada CDKL5 Japan CDKL5 Netherlands
Caley Brown Foundation