Turning Hope
Into Action

Is someone in your family newly diagnosed with CDKL5? We have been in your shoes 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.

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500+

Patients in Connect CDKL5

45+

Countries United in Connect

10

CDKL5 Centers of Excellence in the US

About CDKL5

What is CDKL5 and what does it mean for your family? About CDKL5

For Families

Whether you’re recently diagnosed or going through a change, we’re here. Resources and Support

Ways to Get Involved

Attend an event, host a fundraiser, or support other families. Learn More