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The CIPP Rett Centre is a one of a kind specialist clinic for people with Rett syndrome of all ages. We need your help to keep it going. This new and innovative clinic manages the care of complex patients nationally, assessing, treating and monitoring patients and conducting clinical trials.
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Situation
Rett syndrome is a complex neurological condition which first strikes previously healthy toddlers around the age of two and leaves them with severe disabilities and medical complications for life. There is no treatment although clinical trials of gene therapy are underway. Recent research shows that people with Rett syndrome can live into their fifties with adequate medical care. Sadly, here in the UK, most don't. This is because of a lack of access to specialist clinical care within the NHS.
Solution
Based at King’s College Hospital in London, the CIPP Rett Centre works to break down the complex and intertwined symptoms of Rett into individual symptoms that can be treated on an individual basis with existing medications or combinations of medications, through N=1 trials and industry clinical trials. Not only does the Centre work to care for individual patients, best practise and wider learnings are shared to improve outcomes for individuals with Rett syndrome worldwide.
