Reverse Rett and the CIPP Rett Centre 

23/01/2026

 

Reverse Rett was the only UK charity to provide funding for the CIPP Rett Centre over a period of six years, from its launch in 2019 until Sept 2025. We are incredibly proud of what our funding of the CIPP Rett Centre made possible.

As the Centre became established, our role as a funder naturally evolved. Like all charities, Reverse Rett has a responsibility to use the funds we raise carefully and sustainably, so that we can continue to work towards our wider mission over the long term.

After careful consideration, we took the difficult but necessary decision to end our direct funding of the CIPP Rett Centre in September 2025. This decision was driven by financial sustainability, timing of income, and our duty to protect the charity’s reserves-not by a lack of care for patients or families.

What this means in practice

The CIPP team, including Professor Paramala Santosh, Dr Jatinder Singh, Dr Samiya and colleagues, continue to care for patients with Rett syndrome under the Centre for Interventional Paediatric Pharmacology and Rare Diseases (CIPPRD).

  • The CIPPRD is licensed to care for patients under the age of 25
  • New patients require referral from an NHS consultant
  • NHS funding approval is required before care can begin

This is the same funding model as other specialist Rett clinics in the UK.

Reverse Rett funding previously enabled patients to be seen without NHS funding, allowing the Centre to demonstrate how holistic, personalised care could improve outcomes for people with Rett syndrome.

This funding was initially provided for three years and extended for a further three years due to the impact of the COVID-19 pandemic. It was never intended to be indefinite, with the expectation that a sustainable long-term funding model would be established.

What was achieved

Reverse Rett’s support helped to enable:

  • The first Rett clinical trial in the UK
  • Several subsequent clinical trials for children and adults with Rett syndrome
  • Access for many patients to a level of specialist care not previously available
  • Ongoing collaboration with local clinicians to support the management of complex cases

The Centre has also developed a significant longitudinal dataset, based on detailed clinical knowledge of patients under their care since 2014.

Research and clinical contributions

During the funding period, the CIPP Rett Centre contributed to a growing body of practical research and clinical insight, including:

  • Development of a Rett-specific multi-system symptom measurement tool (MPSS) to support clinical assessment and trial readiness
  • Contributions to international work on outcome measures for Rett clinical trials, helping define what meaningful change looks like
  • Studies exploring genetic modifiers and variability in Rett syndrome, supporting a move towards more personalised approaches
  • Research into autonomic dysfunction, including heart rate variability as a potential biomarker
  • Clinical reviews on disease mechanisms, regression, and neurological features of Rett syndrome
  • Work highlighting challenges and considerations around early identification and screening

These outputs have contributed to a better understanding of Rett syndrome and helped lay important groundwork for future clinical research and treatment development.

Ongoing support from Reverse Rett

Although direct funding has ended, Reverse Rett continues to support families and patients in a number of ways:

  • Providing referral guidance and support letters for those eligible to be seen by the CIPPRD team
  • Offering 1:1 support for families who are unable to access the Centre
  • Continuing to advocate for improved access to high-quality clinical care across all four nations of the UK

We recognise that access to joined-up, holistic care, particularly for adults with Rett remains complex and, at times, frustrating. Families are not expected to navigate this alone.

Looking ahead

We are proud of our support for the CIPP Rett Centre over the past six years and of all that was achieved through this funding.

Ending this funding allows us to refocus resources on other mission-critical priorities, including:

  • Accelerating progress from clinical trials to NHS-approved treatments, ensuring therapies reach patients as quickly and equitably as possible
  • Strengthening the Rett Registry UK and evidence base to support NHS decision-making, policy, and long-term access
  • Focusing on real-world outcomes, including health stability, quality of life, and longer-term impact for people with Rett syndrome
  • Expanding our work to improve access to consistent, high-quality care across the UK, particularly for underserved and adult populations

Reverse Rett exists because of and for this community. Our commitment to people with Rett syndrome has not changed; only how we ensure that commitment remains sustainable for the future.

Thank you

We extend our sincere thanks to Professor Paramala Santosh and the team at the CIPP Rett Centre for their dedication, expertise, and compassionate care of patients and families. Their work continues to have a meaningful impact on the Rett community in the UK and beyond.

Contact

If you have any questions or concerns, we encourage you to contact us directly.

[email protected]