Just Received a Diagnosis?
Navigating a new diagnosis can be overwhelming. We’re here to provide clarity, connect you with resources, and offer a supportive environment community.
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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.
500+
Patients in Connect CDKL545+
Countries United in Connect10
CDKL5 Centers of Excellence in the US
Join us for our 6th Family Educational Conference
June 18-20, 2026 Philadelphia, PA
Connect with families and professionals who understand this journey. Share experiences, build relationships, and engage with clinicians, researchers, advocates, and industry partners working toward the same goal: better outcomes for every individual with CDKL5.
You won’t want to miss this year’s conference!
How far will you go for CDKL5?
June is CDKL5 Awareness month
Join our month-long virtual movement, awareness, and fundraising event. This is a time for our CDKL5 community to rally together to spread awareness for CDKL5 Deficiency Disorder and to raise needed funds for the IFCR. So get moving and walk, step, roll, row, or just move!
Connect CDKL5
When someone you love is affected by CDKL5 Deficiency Disorder (CDD), you want to know about every scientific advance and clinical trial that could help them. That is why the IFCR encourages you to participate in our “Connect CDKL5” platform. Be counted with us, because when we band together, we are best able to advocate for our loved ones.
Join Connect CDKL5