What we do


Reverse Rett is a patient advocacy and research organisation working to deliver treatments and a cure for Rett Syndrome to everyone affected.

In 2007, with the successful reversal of Rett Syndrome in the lab, we entered a new era for research in which we knew a cure was possible. Over the last decade, we’ve invested in high quality research projects such as the RSRT gene therapy and Mecp2 Consortia which have delivered viable potential treatments to industry partners, for development into human clinical trials.

In 2021, these trials are firmly on the horizon and at Reverse Rett, we’re focused on doing what we need to do to build UK medical capacity to deliver complex emerging treatments for Rett Syndrome as soon as humanly possible.

Below, you can see a timeline of key milestones that show progress in the field since the reversal experiments of 2007 and in the work of Reverse Rett which was launched in 2010.

Key Milestones
February 2007

Sir Adrian Bird shows Rett Syndrome can be reversed in mice, a huge moment that paves the way for Rett Syndrome gene therapy research in humans.

July 2010

Reverse Rett is founded by five parents from the home of now CEO, Rachael Stevenson.

July 2011

Reverse Rett support the launch of RSRT’s international MECP2 Consortium to combine global efforts to find a tangible way to reverse Rett Syndrome in humans.

January 2013

Reverse Rett support RSRT launch of Gene Therapy Consortium to compound efforts to drive Gene Therapy for Rett Syndrome into human trials.

August 2013

Gene therapy shown to reverse the symptoms of Rett Syndrome in mice.

September 2013

Reverse Rett start Rett Registry UK in anticipation of human clinical trials of potential new drug treatments.

September 2014

Reverse Rett begin seed-funding a pioneering team at King’s College London, working to develop new outcome measures for patients with Rett Syndrome under Professor Paramala Santosh.

March 2017

UK’s first clinical trial of a potential drug treatment for breathing irregularities begins under the leadership of Professor Santosh at King’s College London with Reverse Rett support.

June 2017

AveXis (now Novartis Gene Therapies) announce development of first human gene therapy product for patients with Rett Syndrome.

June 2019

A 2nd UK clinical trial for a potential treatment launched at three UK trial sites with Reverse Rett support.

March 2020

A third UK clinical trial for Rett Syndrome is launched at trial sites in Manchester and London with Reverse Rett support.

March 2021

Three gene therapy companies announce their intention to file IND applications for upcoming clinical trials of gene therapy in Rett Syndrome before the end of 2021.

Research we fund

We’re working to bring about better days for children and adults with Rett Syndrome by funding laboratory and clinical research projects that will lead to better outcomes for everyone affected, both now and in the future.


How we fund that research

Our U.K. clinical work is subject to a rigorous peer review process, validated by our membership of the Association of Medical Research Charities.

International Rett Syndrome research is funded through our partnership with the Rett Syndrome Research Trust who provide peer review and monitoring for those projects.

Our policies and documents

Reverse Rett is a full member of the Association of Medical Research Charities (AMRC), a network of 150 medical and health research charities who deliver high-quality research that saves and improves lives. Membership of AMRC has to be earned through adherence to stringent peer review criteria.

With people with Rett Syndrome at the heart of everything we do, we’re proud to hold ourselves to the highest standard in all areas of our operations.

I was first introduced to Rett Syndrome when I received an out of the blue phone call from Adrian Bird, who first discovered MeCP2 protein, requesting some help with a set of specific experiments. Following this successful collaboration, Rett Syndrome research has become a primary focus of my lab. While traditional drug approaches will likely be restricted to correcting specific aspects of what goes wrong in Rett Syndrome, it is conceivable that Gene Therapy can correct the cause of Rett Syndrome at it’s very source and thus provide a profound recovery of function.

Dr Stuart Cobb, Simons Fellow and Reader in Neuroscience, University of Edinburgh

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