Our commitment to the Rett community and the CIPP Rett Centre 

23/01/2026

Reverse Rett funded and supported the CIPP Rett Centre from its very beginning in 2019. Over six years, we invested several million pounds to help establish this specialist Rett service within the NHS, something that did not previously exist. 

We are incredibly proud of what that funding made possible. 

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

After careful consideration, we have taken 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. 

Importantly: 

  • The CIPP Rett Centre has not closed 
  • Reverse Rett has not withdrawn support from families 
  • We continue to provide referral guidance and support letters 
  • We remain committed to improving access to care for both children and adults with Rett syndrome

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

  • accelerating gene-therapy and disease-modifying research 
  • supporting new and emerging treatment approaches 
  • strengthening advocacy for equitable NHS access across the UK 

We know referrals, particularly for adults, can feel complex and frustrating. Families are not expected to navigate this alone. We will continue to provide information, referral support, and advocacy to help patients access appropriate care. 

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. 

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

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.