Cognitive Function in Rett Syndrome: Where are we at?

By Dr. J Singh, MSc, PhD

How do we measure cognition? Typically, standardized tests which require verbal responses can be used. As a young child I had first-hand experience of these tests. My communication was severely limited and so I was exposed...

AveXis Reports on Rett Gene Therapy Program

In June of 2017 AveXis announced that based on encouraging data generated by RSRT’s Gene Therapy Consortium it would advance the lead MECP2 gene therapy candidate toward clinical trials.

On 28th February 2018 the company provided an update on its...

Rare Disease Day: Only you

By Rachael Stevenson

It’s International Rare Disease Day today and the theme this year is research. Research is important to anyone affected by a rare disease and anyone affected knows why. Only research will ultimately bring about treatments and...

Living like Livvy

Author and long time Reverse Rett supporter, Andre Govier has written a book about living with Rett Syndrome which is available to buy now with all proceeds being donated to Rett research.

Andre first heard about Rett Syndrome a number of years ago...

Thank you and Happy New Year!


As we come to the end of 2017, we’d like to thank all Reverse Rett supporters and fundraisers.

Through your efforts, there have been a number of highlights throughout the year. We’ve picked a few moments we’ll never forget to share with you and...

UK Rett Disorders Working Group update

By Rachael Stevenson

The UK Rett Disorders Working Group met on the 6th of December 2017 in Covent Garden, London. The group comprised of the following individuals:

Hilary Truss, Rachael Stevenson, Judith Sheppard, John Sharpe,  Becky Jenner (Rett...

Life, Rett, Etc: A Matter of Life and Death

By Rachael Stevenson

A lot of things scare me about Rett Syndrome but my number one fear is aspiration pneumonia.

This fear is not ungrounded. Lower respiratory tract infection is the most common cause of death in Rett Syndrome, followed by...

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