Reverse Rett is a UK charity driving treatments and a cure for Rett syndrome into the lives of everyone affected.

The UK Rett Syndrome community is at a pivotal moment at the moment with two clinical trials of gene therapies underway. 

Much is required of our small, rare disease organisation at this time. At Reverse Rett, we are packing a mighty punch in accelerating disease-modifying treatments for Rett syndrome but we need your support to keep our work going.

 

Rett Syndrome Information

Information about Rett Syndrome

Find out everything you need to know about the symptoms of Rett Syndrome, diagnosing the disorder, how to manage Rett  and the current state of research.

I am a parent or carer

Stay informed with practical information and resources which can help keep children and adults with Rett Syndrome as healthy as possible until we have effective treatments for the condition.

I want to help

At Reverse Rett, we receive no government funding. The families, friends and communities of children with Rett syndrome have raised 99% of funds which have led to current research progress. We need your help to continue our work.

Racing for change

Reverse Rett works to accelerate treatments and a cure for Rett syndrome. Our small but national team manages the Rett Registry U.K., provides recruitment and support for clinical trials, raises funds for research, core funds the specialist CIPP Rett Centre and works to facilitate and accelerate the drug development process here in the UK.

Latest news

  • Blankets and rugby for Reverse Rett

    Blankets and rugby for Reverse Rett

    Everyone who has a child with Rett or MECP2 Duplication syndrome knows how difficult
  • Reverse Rett Board of Trustees: Our steady foundation for changing times 

    Reverse Rett Board of Trustees: Our steady foundation for changing times 

    On April 1st, the Reverse Rett Board of Trustees met for our annual in
  • Why ‘Good Enough’ is Enough; Letting Go of Mum Guilt as a Parent to a Child with Complex Needs  

    Why ‘Good Enough’ is Enough; Letting Go of Mum Guilt as a Parent to a Child with Complex Needs  

    By Rhiannon Louden (She/her), Rare mum chronicles  Let’s stop putting pressure on ourselves to

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