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Guidelines, reports and books

We have recently developed recommendations to support clinical practice for gastro-intestinal disorders including growth and scoliosis in Rett syndrome.

Consumer reference group

The ARSS has a Consumer Reference Group to ensure family representation and input into issues relating to the design, management and output of the study.

IASSIDD 15th World Congress

Our AussieRett team recently visited Melbourne, Australia for the IASSIDD 15th World Congress.

The Rett Syndrome Journey: Pathways to Follow

Our InterRett team visited Geelong, Australia to attend the first ever Rett Syndrome Association of Australia national conference.

8th World Congress on Rett syndrome

Thank you to all guests and participants of this year's 8th World Congress on Rett syndrome, which was held from May 13-17th, 2016 in Kazan, Russia.

Participate in CDKL5 Research

Participate in our CDKL5 research to help advance research outcomes in the CDKL5 research field by our children's health specialist researchers.

"You can't stop loving them" - a grandmother's story about her granddaughter who has Rett syndrome

You can't stop loving them: the gift of a grandchild can sometimes be painful, writes Wendy Macklin.

HBF Run for a Reason 2014

On Sunday May 25th, the 'I love someone with Rett syndrome' team participated in the annual HBF Run for a Reason.

MECP2 duplication syndrome in the news

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...

3rd European Rett Syndrome Conference, October 17-19, Maastricht, The Netherlands

Following last year's World Rett Syndrome Congress held in New Orleans, the 3rd European Rett Syndrome Conference was held in the Netherlands over 3 days.