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Rett Syndrome is a life threatening and complex brain disorder which first strikes healthy young children, leaving them with lifelong complex needs. CPMRS is a research-focused medical clinic at King’s College Hospital working to improve the lives and survival rates of all those affected.

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Categories

  • Hospitals/Hospices Hospitals/​Hospices
  • Medical Research Medical Research
  • Beneficiaries

    • Children (3-18) Children (3-18)
    • People With Disabilities People With Disabilities
    • Women & Girls Women & Girls

    Situation

    Most children with Rett lose their speech and the use of their hands in very early childhood. In time, most lose the ability to walk as well. But often it is symptoms which are less obvious which cause the most distress to patients and families; from difficulties with breathing, eating, sleeping to cardiac issues and anxiety. Whilst Rett Syndrome is not inherently fatal, some UK patients are still dying prematurely due to poorly-managed, inadequate and or fragmented clinical care.

    Solution

    There are severe gaps in understanding of fundamental issues regarding the treatment of children and adults with Rett. Symptoms which would be a great cause for concern in the neuro-typical population are often dismissed as merely a result of the condition and left untreated. CPMRS will change the way in which these patients are medically managed and treated, leading to improved outcomes and longevity, particularly in more complex patients who are at increased risk of early mortality.

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    100%
    Categories

  • Hospitals/Hospices Hospitals/​Hospices
  • Medical Research Medical Research
  • Beneficiaries

    • Children (3-18) Children (3-18)
    • People With Disabilities People With Disabilities
    • Women & Girls Women & Girls