The Australian Rett Syndrome Study

28/02/2022

This short documentary tells the story of Aleix and his family. Aleix is a happy little boy, affected by the MECP-2 Duplication Syndrome. A rare genetic diso...

31/12/2018

25/09/2018

28/05/2018

A severe neurodevelopmental disorder mostly affecting girls.

04/01/2018

Happy 2018 to all of our AussieRett families!

We are very excited to share our most recent AussieRett newsletter with you all. Some families may have already received copies of our newsletter via email. Please feel free to share this digital copy with other families!

If you are interested in joining our mailing list, participating in AussieRett, or if your contact info, post mail or email address have recently changed, please send us an inbox message or contact us at: AussieRett@telethonkids.org.au

06/11/2017

Jenny Downs and Helen Leonard with Dr Michael Freilinger from Austria attending the 5th European Rett Syndrome Congress in Berlin, Germany.

02/11/2017

Helen Leonard with Claude Buda from the Rett Syndrome Association of Australia and Tam and Inge from the Rett Syndrome Comprehensive Research Institute in China preparing for the 5th European Rett Syndrome Congress in Berlin, Germany.

28/10/2017

Congrats to Telethon Kids researchers Dr Helen Leonard & Dr Jenny Downs on the publication of 'Rett Syndrome'

https://twitter.com/telethonkids/status/923428014540464128

“Congrats to Telethon Kids researchers Dr Helen Leonard & Dr Jenny Downs on the publication of 'Rett Syndrome': https://t.co/UKzYUUGNkQ”

31/07/2017

We recently had the pleasure of holding an afternoon tea for families of children with Rett syndrome and MECP2 Duplication syndrome. A big thank you to everyone who joined us!

25/07/2017

Our own Dr Helen Leonard was recently featured on Today Tonight. MECP2 duplication syndrome, which more frequently affects boys, is one of the Rett syndrome related disorders that our research group studies.

16/07/2017

Caroline Dempster and I (Claude Buda) representing the RSAA met with Prof Helen Leonard and Dr Jenny Downs of the Telethon Institute in Perth to join forces and work together in these exciting times to better inform and assist the Rett Community in Australia. Helen and Jenny have been working tirelessly over the years and are about to release another study to update their database to ensure we have the best possible information to help Australian children suffering from Rett Syndrome.

11/04/2017

https://www.hbfrun.com.au/reasons/articles/marlees-story?utm_campaign=run_launch&utm_medium=social&utm_source=facebook&utm_content=marlee_fb

30/03/2017

24/03/2017

Dr Leonard is attending the International Symposium of Rett syndrome in Japan – a gathering of leaders in Rett syndrome research from all over the world. CLICK to learn more about Telethon Kids’ Rett syndrome research http://bit.ly/2nqhMQH

24/03/2017

24/03/2017

Dr Leonard is attending the International Symposium of Rett syndrome in Japan – a gathering of leaders in Rett syndrome research from all over the world. CLICK to learn more about Telethon Kids’ Rett syndrome research http://bit.ly/2nqhMQH

21/03/2017

Spotted! Telethon Kids Associate Professor Helen Leonard in Kobe, Japan.

Associate Professor Leonard has been presenting at the ‘International Symposium of Rett syndrome’ – a gathering of leaders in Rett syndrome research from all over the world. CLICK to learn more about Telethon Kids’ Rett syndrome research http://bit.ly/2nqhMQH

The Australian Rett Syndrome Study

28/02/2017

Click here to visit our new website: https://rett.telethonkids.org.au

Today, it’s Rare Disease Day – and we’d like to say a big THANK YOU to all those children (and their families!) that work with us as we seek to get to the bottom of some of the rarest diseases affecting children.

Like Marlee, who has been helping us with our research into the causes and best treatment of Rett syndrome, a neurological disorder that affects approximately 1 in 9,000 girls in Australia.

SHARE if you’re inspired by the bravery of children like Marlee.