Committee
Committee member details will be published here once our association is formally registered.
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.
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Scientific & Medical Advisory Committee (SMAC)
Our SMAC is being formed. Member details will appear here once confirmed.
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Registration
Registration details and ABN will be published here once formal registration is complete.
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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.
For clinicians, researchers, and industry partners
CDKL5 Australia is the Australia-side conduit between families and the global CDKL5 research effort. We engage directly on registry liaison, family-facing trial recruitment, and Australian regulatory pathway navigation, including the Therapeutic Goods Administration (TGA), the Pharmaceutical Benefits Scheme (PBS), and the Special Access Scheme (SAS).
Partnership enquiries: partnerships@cdkl5australia.com.au
We are here for families
Our mission is to support Australian families, amplify their voice, and ensure CDKL5 Deficiency Disorder is understood and prioritised.