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Recognise. Reframe. Respond.

Publications from 2017 dating back to 2004 of CDKL5 researchers.

We aim to share our research findings with families so that they may better understand Rett syndrome and the future for their family.

We interviewed 17 parents with a daughter with Rett syndrome to gain their perspectives on how their daughter communicates and barriers.

For this study, we examined how Rett syndrome characteristics can be affected by X-inactivation for 2 of the common types of mutation - p.R168X and p.T158M.

We set out to describe the feeding difficulties and nutrition of girls with Rett syndrome and to examine what factors may be influencing their nutrition.

Therefore, we used video data to examine changes in hand function over time. We also investigated what other factors might influence these changes.

News & Events

Ever wondered what a national committee does? Who can be a member and what they do?

News & Events

Proudly funded by a Telethon Trust Research Grant, the Supporting Families project started in 2024 with the aim of co-designing a new clinical pathway for children with early stage type 1 diabetes (T1D).

News & Events

WA teenager Theo Grant has been living with type 1 diabetes since he was two-years-old, but the condition hasn't stopped him from setting big goals