CDKL5 Australia

About CDKL5 Australia

Who We Are

CDKL5 Australia is a community association run by Australian parents and carers of children with CDKL5 Deficiency Disorder.

We are not a research foundation. We exist to connect families, provide information, and be a credible point of contact for clinicians and researchers in Australia.

A young child sitting in a wheelchair in a community setting

  • Committee

    Committee member details will be published here once our association is formally registered.

  • Scientific & Medical Advisory Committee (SMAC)

    Our SMAC is being formed. Member details will appear here once confirmed.

  • Registration

    Registration details and ABN will be published here once formal registration is complete.

  • Transparency

    We are committed to transparency in how we operate. See our Engagement & Transparency page for our policies on industry engagement and conflicts of interest.

We are here for families

Our mission is to support Australian families, amplify their voice, and ensure CDKL5 Deficiency Disorder is understood and prioritised.