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For Families


Welcome to our CDKL5 community. We have been in your shoes as a newly diagnosed family, and we understand that this diagnosis can bring a world of uncertainty, questions, or fears. Please know that you are not alone on this journey. We want to share a few things you should know about CDKL5.

  1. The IFCR is here to support you. Our organization was started with one goal in mind – to make a healthier future for our children. Incredible progress has been made since we began in 2009.
  2. No one can tell you what the future holds for your child. While there are common symptoms that our children experience, no two children with CDKL5 Deficiency Disorder are exactly alike – even those with the same genetic change. Your child will write their own story.
  3. CDKL5 research is thriving and you can take an active role. An easy place to start is to “Connect CDKL5.” Let the IFCR know who you are and we will do our best to share opportunities to get involved.

Newly Diagnosed Families

If you’ve received your CDKL5 Deficiency Disorder diagnosis within the past 12 months, we welcome you as a new family to our CDD community. We’d love to send you a New Family Welcome Gift* as a show of support. Email Marissa ( to receive one.

*New Family Welcome Gift generously sponsored by UCB and Marinus.

Support Match

Our trained Family Support Representatives (FSRs) are available to CDKL5 families and caregivers.

Sibling Support

The VIP Sibling Collaboration Team has developed three special kits just for rare epilepsy families based on research, expertise, and lots of community input, including from VIP siblings. Visit this link to request yours.

Get Updates

Sign up for the IFCR newsletter to get updates on research, treatments, & our work for CDKL5.