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Closed 23/09/2021

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    Weʼve raised £0 to raise awareness and support families living with Aicardi-Goutières syndrome

    Closed on Thursday, 23rd September 2021

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    Story

    Aicardi–Goutières Syndrome or AGS is a rare genetic disease. It affects the brain and immune system causing the body to produce chemicals that would normally fight viral infections but instead attack healthy cells. The majority of affected children experience significant intellectual and physical problems within the first few months of life and last for the whole life span. There is no known cure but there are options for clinical trials and further research.

    The AGS network is the UK's patient organisation and was created in 2020 by a group of parents directly affected by the syndrome. We want to ensure that families feel supported and are armed with the knowledge and information they need to secure the correct resources to help their children thrive. We need to continue to be ‘trial ready’ in order to remain attractive to pharmaceutical companies and encourage them to invest into research. These companies want to see a network of patients and their families available to communicate with along with a circle of scientific professionals.

    read our family stories about living with AGS on our website; http://agsnetwork.co.uk/agsnetwork-home/living-with-ags/

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    Tina Nesbitt

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      1 year ago

      Tina Nesbitt started crowdfunding

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      Page last updated on: 5/26/2021 21.42

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        Tina Nesbitt

        Tina Nesbitt

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