We believe change is not only possible, but within reach.

We’re a dedicated team from the UK working in partnership with the US-based Rett Syndrome Research Trust. Together we will deliver a cure for Rett Syndrome in a timeframe which is meaningful for people living with the condition today.


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

Our charity was founding in late 2009 by five parents who had each seen the devastating effects of Rett Syndrome up close. Together, we decided to do whatever we could to impact international efforts to speed up research into treatments for the condition and ultimately help find a cure.

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; in the Charity Times Awards 2011 and the Just Giving Awards 2012 respectively 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.