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 USOur 6th Family Educational Conference was a huge success!
We connected with families and professionals who understand this journey. We shared experiences, built relationships, and engaged with clinicians, researchers, advocates, and industry partners working toward the same goal: better outcomes for every individual with CDKL5.
Your Family’s Guide to Gene Therapy
Gene therapy for CDKL5 offers hope, but there is also a lot we do not know yet. You don’t need to understand everything all at once. Take it step by step, go at your own pace, and remember you’re not alone!
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