MOVE Rett will build the UK's first Rett Ready Network, ensuring children and adults with Rett syndrome can access specialist movement support before and after emerging gene therapies, while improving lifelong health for everyone living with Rett syndrome.
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People with Rett syndrome have little access to specialist movement support, despite relying on assisted movement throughout life. As gene therapies approach, treatment readiness and rehabilitation are becoming increasingly important. Without appropriate support, people risk losing mobility, respiratory function and bone health. The UK currently has no coordinated Rett-specific movement pathway, leaving families without consistent specialist provision.
Reverse Rett will establish the UK's first Rett Ready Network through MOVE Rett. Building on our Manchester pilot, we will develop a national framework enabling existing specialist centres to become Rett Ready through training, specialist guidance and shared standards. The network will expand alongside emerging gene therapies, integrating movement into treatment readiness, rehabilitation and lifelong support for everyone living with Rett syndrome.



