Racing for change

We’re a patient advocacy and research organisation focused on accelerating treatments and a cure for Rett Syndrome to everyone affected.


Our vision

We want a world where children with Rett Syndrome are diagnosed quicker, earlier, and more effectively than they are right now. A world where much more is known about the condition and factors that affect progression. A world where at every stage of development, treatments are available to counteract its symptoms. A world where we ultimately deliver a cure and enable people with Rett Syndrome to lead free and healthy lives.

Founded by parents

Reverse Rett was founded in late 2009 by five parents who had each seen the devastating effects of Rett Syndrome up close. Together, we decided to do what we could to impact research into treatments and a cure. Fourteen years later, Rett syndrome gene therapy clinical trials are underway. Now we have more work than ever to do to bring these disease-modifying treatments for Rett syndrome home.

Award-winning dedication

We don’t seek awards, but it is heartening to see our efforts being recognised. We have won two Best New Charity Awards – Charity Times Awards 2011 and the Just Giving Awards 2012 – and were shortlisted for Just Giving’s ‘Charity of the Year Award’ in 2016 and 2018. Our small but national team is now based in Manchester.