Turning Hope
Into Action

CDKL5 Deficiency Disorder impacts every aspect of a child’s life. We're here to provide answers, support, and a path forward.

500+

Patients in Connect CDKL5

45+

Countries United in Connect

10

CDKL5 Centers of Excellence in the US

Learn About CDKL5

Understand the basics, symptoms, and diagnosis of CDKL5 Deficiency Disorder. Explore now

For Families

Resources, support groups, and guidance for newly diagnosed families and caregivers. Find Support

For Researchers & Clinicians

Access to the latest research, clinical trials, and collaboration opportunities. Resource Library

Featured Patient Story

Stella Strong: One Family’s Journey

Girls smiling wearing a yellow sun dress, denim jacket, and sun hat, with grass, bushes, and a building in the background.

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Upcoming Events

Longboard Pharmaceuticals Announces Phase 3 Clinical Trial Site Activations

Stella Strong: One Family’s Journey

Girls smiling wearing a yellow sun dress, denim jacket, and sun hat, with grass, bushes, and a building in the background.

The Williams Family: Ezra’s Bingo Bash

A couple wearing yellow shirts each holding one of their children in front of a sign that says Ezra's Bingo Bash in green and purple on a white background.

From Diagnosis to Determination

Mallory in between her parents at a fundraiser with a banner with logos in the background.

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
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