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 7th 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.
The CDKL5 Connection Podcast
CDKL5 Connection is the official podcast of the International Foundation for CDKL5 Research (IFCR), bridging science, care, and community. Through conversations about research, clinical trials, care, daily life, and IFCR updates, the podcast helps make complex topics more accessible and keeps the CDKL5 community informed and connected.
Have a question you’d like us to explore? Submit it for Ask Dr. Raj and help shape future episodes around the topics that matter most to our community.
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