Share your Covid-19 Story - Survey Results
01 March 2021
Many of our NF community speak of difficulties accessing support throughout the crisis and adapting to the varying changing restrictions. In order to understand this better we as members of the Embracing Complexity Coalition want to hear from you. The coalition is made up of over 50 organisations who are all working together to coordinate campaigning and research focussed on neurodevelopmental conditions (NDCs), such as Neurofibromatosis. Embracing Complexity is very grateful for your participation in taking part in their survey.
Having shared your experiences of Covid-19 – whether positive or negative, you helped to develop recommendations for reducing the negative impact on people with Neurofibromatosis. Ensuring that moving forward, in the event of future lockdowns & prolonged social distancing, we can protect those that are vulnerable, as well as making sure that any positive experiences of some people with Neurofibromatosis in lockdown are not reversed as society begins to open up.
Learning from lockdown to support those who think differently.
Nerve Tumours UK is not responsible for any data management and content of the research.
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The Big Lottery Fund pays for 2 Patient Info Days
Nerve Tumours UK receives Lottery funding
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New research into non-discrimination law
Durham University is looking for participants who look different due to their health complications. such as NF.
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Letter from our new Chair
A letter detailing the vision of our new chair, and the future of the charity.
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Launch of Nerve Tumours UK
Following a major strategic review, the Neuro Foundation charity is now known as Nerve Tumours UK.
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NF1 research award first for UK consultant
Dr Shruti Garg is the first non-US resident to receive NF1 $555,000 research award.
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Polly’s Story (as told by Mum Emily)
"Despite being on weekly chemotherapy she is a happy child and never fails to inspire us all"
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EDEN Study Progress Report
The EDEN study has enrolled 30 babies and toddlers to understand how infants with NF1 develop.
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Ella’s story
Have a read of Ella's story here. An uphill battle which we know she will turn around!
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Grace’s Story
Have a read of Grace's story and she overcame her insecurites surrounding her NF
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