living with rett syndrome

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,...

MBNA General Foundation award a £5,000 grant for P2P

MBNA employee, Gayle Fowler with daughter, Ciara and son, Michael

Reverse Rett would like to thank MBNA General Foundation for awarding a £5,000 grant in support of the Reverse Rett Parent 2 Parent project. MBNA heard about Reverse Rett and the...

Universities raise £10,639 at Varsity

Charlotte Way representing Reverse Rett at the cheque presentation in Plymouth

We were delighted to be chosen by the University of Plymouth as their charity at this year's Varsity Sports Challenge against UCP Marjon. An amazing £10,639 was raised...

Team Reverse Rett raise over £20k at Just Walk 2014

The 60k walkers get ready to roll

On a rainy and misty day on May 10th, Team Reverse Rett raised over £20,000 to help speed treatments and a cure for Rett Syndrome and MECP2 Duplication Syndrome by taking on 'Just Walk 2014.'

There were 48 members...

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