Reverse Rett, the CIPP Rett Centre and Looking to the Future 

For six years, from 2019 until September 2025, Reverse Rett was proud to provide establishing funding for the CIPP Rett Centre.  

During that time, the Centre became an important part of the UK’s Rett syndrome landscape. It provided specialist multidisciplinary care for hundreds of individuals and families, helped establish one of the UK’s leading Rett clinical research programmes, contributed to groundbreaking clinical studies and supported the delivery of the UK’s first Rett syndrome clinical trials. 

We are incredibly proud of everything that was achieved through this partnership. 

As families begin receiving notification that the Centre is closing, some have understandably asked why Reverse Rett’s funding came to an end and what this means for the future of specialist Rett care. 

We hope this article provides some context. 

A Shared Vision 

When Reverse Rett first agreed to fund the CIPP Rett Centre in 2019, our ambition was to demonstrate what specialist, multidisciplinary Rett care could look like. 

At that time there was no dedicated specialist Rett service of this kind in the UK. We believed that by investing charitable funds, we could help establish a model that would improve care, support research and provide a platform for future clinical trials. 

The funding was always intended as an investment to help establish and demonstrate the value of the service while longer-term arrangements could be developed.  

Originally agreed for three years, the funding was extended to six years because the COVID-19 pandemic significantly disrupted both NHS services and charitable fundraising. 

Despite fundraising ceasing during the Pandemic we still funded the centre throughout lockdown through campaigns like the CIPP Rett Centre Appeal as the team continued seeing patients remotely.

Looking back, we believe that investment achieved exactly what it set out to do. 

What Your Support Made Possible 

Thanks to the generosity of our supporters, the Centre was able to: 

• Provide specialist multidisciplinary care to hundreds of people living with Rett syndrome; 

• Establish an internationally recognised Rett clinical programme; 

• Contribute to important research and clinical trials; 

• Develop one of the UK’s richest longitudinal clinical datasets; 

• Improve understanding of Rett syndrome and its management; and 

• Demonstrate the value of coordinated specialist care. 

These achievements represent a lasting legacy for the UK Rett community and should provide a strong foundation for future specialist services. 

Why the Funding Could Not Continue Indefinitely 

Reverse Rett is a small national charity funded entirely through donations, fundraising and the dedication of families and supporters. We receive no routine government funding. In total, almost £3M was spent on establishing and running the centre.

Our role has always been to invest where charitable funding can have the greatest long-term impact: accelerating research, supporting clinical trials, developing the Rett Registry UK, generating evidence to support future treatment access and advocating for better care across the UK. 

While charities can play an important role in establishing innovative services and demonstrating new models of care, they cannot sustainably replace long-term NHS commissioning. 

Over time, our Trustees needed to consider how best to use limited charitable resources to benefit the entire UK Rett community. As our work expanded nationally, this meant balancing continued investment in individual programmes with the growing need to support research, evidence generation and future access to emerging treatments. 

This was not a reflection of the quality or importance of the CIPP Rett Centre. Rather, it reflected the reality that a small charity cannot indefinitely fund healthcare services that should ultimately be commissioned as part of the NHS. 

What Happens Next? 

The closure of the Centre does not diminish what it achieved. 

If anything, it demonstrates the value of specialist Rett expertise and highlights why sustainable commissioning of specialist services is so important. 

People living with Rett syndrome continue to need access to clinicians with appropriate expertise, coordinated multidisciplinary care and clear pathways between paediatric and adult services. Reverse Rett will continue to advocate for these principles and work with NHS organisations, clinicians and policymakers to improve access to specialist care across the UK. 

At the same time, our focus is increasingly on ensuring that the UK is ready for the next generation of treatments. 

Through initiatives including the Rett Registry UK, Health Milestones, mortality research and our work on health economics and patient evidence generation, we are building the evidence needed to support clinical development, future NICE evaluations and equitable access to emerging therapies. 

Our Commitment Has Not Changed 

Although our direct funding of the CIPP Rett Centre has ended, our commitment to people living with Rett syndrome remains as strong as ever. 

We will continue to: 

• Support families across the UK; 

• Maintain and expand the Rett Registry UK; 

• Work alongside researchers, clinicians and industry; 

• Generate the evidence needed to support future treatment access; 

• Advocate for improved specialist care; and 

• Help ensure that advances in research translate into real benefits for everyone living with Rett syndrome. 

Our mission has always been to improve both the quality and length of life for people with Rett syndrome. 

Thank you to all of our families and supporters for their incredible support which enabled us to fund the CIPP Rett Centre.

If your child has been recently discharged from the CIPP Rett Centre then CLICK HERE to find out what to do next