Reverse Rett is a patient advocacy and research organisation focused on accelerating treatments and a cure for Rett syndrome to 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.

 

Information about Rett Syndrome

Find out everything you need to know about the symptoms of Rett Syndrome, diagnosing the disorder, 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

  • What is gene therapy and how can it help people with Rett syndrome?

    What is gene therapy and how can it help people with Rett syndrome?

    September 2023   Emerging Gene Therapies Bitesize – Session 1 Reverse Rett CEO Rachael Stevenson
  • The UK Rett Syndrome community is at a pivotal moment at the moment with two clinical trials of gene therapies underway. 

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

    Much is going to be required of our very small, rare disease organisation at
  • Neurogene doses first paediatric patients in US clinical trial of NGN-401 gene therapy 

    Neurogene doses first paediatric patients in US clinical trial of NGN-401 gene therapy 

    November 30th 2023-Neurogene has announced today that they have dosed the first two female

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