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 Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing
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Appearance Matters: Prof Diana Harcourt and Maia Thornton
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Jane Frances
Here Jane Frances tells us how findings from psychological research can help parents and teachers of children with NF
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Sarah’s Story
Sarah has NF1 and works full time for the NHS check out her intriguing story here
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Laura’s Story
Read about Laura's experience of undergoing surgery to remove a tumour from her spine here:
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Visible Difference Equality Law Research: summary of findings
Find out more about the results here:
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The Galloway Family and their “amazing” four year old Ruby
Have a read about the incredibly brave young Ruby Galloway (NF1) and check out their previous and future fundraiers.
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“Framing the face: History, Emotion, Transplantation” a blog from James Partridge
Find out more about the blog and what is concerns here:
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A Spooktacular Halloween day for NTUK
Find out more about the wonderful fundraising event here:
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