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

  • Neurogene Announces First Patient Dosed in High-Dose Cohort of NGN-401 Gene Therapy Clinical Trial for Rett Syndrome

    Neurogene Announces First Patient Dosed in High-Dose Cohort of NGN-401 Gene Therapy Clinical Trial for Rett Syndrome

    On June 18th, Neurogene provided an update on the first “high dose” patient in
  • Taysha Announcement Key Takeaways

    Taysha Announcement Key Takeaways

    On June 18th, Taysha shared interim clinical data from the REVEAL Adolescent & Adult
  • Neurogene press release: NGN-401 Gene Therapy for Rett Syndrome Selected by FDA for START Pilot Program

    Neurogene press release: NGN-401 Gene Therapy for Rett Syndrome Selected by FDA for START Pilot Program

    On June 3rd, Neurogene announced that the FDA has chosen their Rett syndrome gene

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