Family Support
Connect with parents and carers who understand daily life with CDKL5.
Community
Connect with families who understand CDKL5.
CDKL5 can feel isolating, especially after diagnosis. Our community helps Australian families share experiences, ask questions, find support, and stay connected with research and events.
Practical Guidance
Share experiences around therapies, equipment, appointments, schooling and care.
Research & Events
Stay informed about Australian updates, awareness campaigns, research and opportunities to participate.
From a parent in our community
A message from another CDD parent
We are with you, we are walking beside you, and although we wish you weren’t here with us, we are still here.
Anna’s letter to newly diagnosed families: a story of grief, hope, and what is possible.
Private Facebook Group
Our private Facebook group is a safe space for Australian CDKL5 families to ask questions, share lived experience, and support each other.
Membership is reviewed to keep the group family-focused and safe.
International CDKL5 Facebook page
Public-facing page run by the International CDKL5 Disorder Database team at The Kids Research Institute Australia. Posts cover database updates and CDKL5 research highlights. The page is updated infrequently due to limited team capacity, so it complements rather than replaces the Australian / NZ private group above.
You do not need to have all the answers today. Start by connecting with someone who understands.