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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Working Together: from a tentative diagnosis and beyond
Emily Owen & her mother Anthea, recount their memories of Emily's NF2 diagnosis
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Tate’s Shine A Light Marathons
Support Tate with his 2023 Shine A Light 100 mile Challenge
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Beth’s NF1 story
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Shine A Light 2023
The Shine A Light 2023 campaign had 162 buildings around the UK & the Republic of Ireland lit up in blue!
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Christine’s Coronation fundraising
Christine has been fundraising for NTUK for 10 years, since her grandson was diagnosed with NF1.
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Megan’s NF1 story
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Shine a Light May 2023
Shine A Light Activities during World NF Month May 2023 - Get Involved!
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Charlotte’s NF1 story
Charlotte and her brother & dad have NF1. She is running the Shine a Light Marathon during May to raise awareness
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