living with rett syndrome

Calling all grandparents!

Hazel with her granddaughter, Lotta

By Hazel Beiny

It was 7 years ago when my beautiful granddaughter Lotta was diagnosed with Rett Syndrome. I know many of you will have had the same experience and will have benefited from the support and advice...

Just as they are? A Mother’s perspective

By Emily Marsden

"I wouldn't change her for anything"

Since Daisy was diagnosed with Rett Syndrome I have begun to notice a similar phrase or sentiment cropping up amongst parents of other girls with Rett or equally complex disorders. I recently...

UK Clinical Trial update


March 2018

There had never been a clinical trial of a potential treatment for Rett Syndrome in the UK until the Sarizotan trial started at the Clinical Research Facility, King’s College Hospital in London last year.

The drug is being trialled...

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...

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...



Guest blog post by Gael Gordon PhD.

This week for the first time, I appeared in the Sun.  I would like to make it clear that this was never on my bucket-list but getting the news about Rett Syndrome sometimes means doing stuff like this.  The...

Rett Disorders Severity of Symptoms Survey


The Rett Disorders Alliance of the UK needs your help!

If you care about someone with Rett Syndrome and want to see improved medical/clinical services for people with Rett Disorders in the UK, please complete this survey before Monday 19th...

The Rett Disorders Alliance forms

We are pleased to announce the formation of the Rett Disorders Alliance of the UK.

The Rett Disorders Alliance consists of Charities or patient groups which have direct or indirect involvement with issues relating to the management of symptoms,...

Page 1 of 3 pages