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Since Reverse Rett was founded in 2010, we’ve invested over £8 million in high-quality research projects such as the RSRT Gene Therapy and MECP2 Consortia, which have led to the gene therapy programs in clinical trials today.
In 2014, we started the UK Rett syndrome patient registry, the Rett Registry UK to encourage pharmaceutical companies to initiate clinical trials here in the UK.
We seed-funded the Centre where the very first UK drug trial for Rett was launched in 2017.
We provided clinical trial support services to that first trial and to three more UK clinical trials of potential drug treatments from 2017-2022, helping with recruitment and organising travel, accommodation and expense reimbursements for participating patients and families.
In 2019, we helped launch the CIPP Rett Centre in London, bridging a critical gap in clinical care for complex patients with Rett of all ages from all over the UK.
Since 2020, we’ve run online educational workshops for families and carers, providing them with essential health information.
In 2023, we started working to develop the tools and resources we’ll need to drive new treatments for Rett syndrome through the regulators and payers, ensuring access for all UK patients.
In 2024, we started running an annual educational conference, ‘LEAP’ for families, caregivers, researchers and health care professionals.
We advocate for treatment for Rett syndrome nationally and internationally, through our work with pharmaceutical companies, regulators and clinicians.
In 2025, we are working in partnership with Costello Medical to develop a ‘UK Rett syndrome Burden of Illness Model’ to help us bring new treatments for Rett syndrome through the regulators and payers.
Clinical trials of gene therapy are now underway around the world with two centres currently recruiting in the UK.
We continue to fundraise in support of research projects focused on new and improved methods of treating the underlying causes of Rett syndrome.
We can’t do any of this without your support!
Rett Registry UK is the UK’s Rett syndrome patient registry.
A patient registry is a survey that collects information about people with a specific medical condition held on a secure and confidential database. The Rett Registry UK helps us to:
From 2019-2025, we provided core funding for the CIPP Rett Centre based at SLAM/King’s College Hospital in London.
The CIPP Rett Centre bridges a critical gap in clinical care for complex patients with Rett syndrome from all over the UK.
For more information about referrals to the CIPP Rett Centre, please follow the link below.
We provide multi-media programs of information and education around both emerging treatments and managing the symptoms of Rett syndrome in order to protect the health and longevity of individuals with Rett syndrome for as long as possible.
The US based RSRT continue to fund ongoing research focused on refining disease-modifying therapies so that they are less risky and more precise. We can only support these critical research projects with your help. Please tell us if you would like funds you raise to be ring-fenced for lab research.