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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NF1 Teenager Support Day!
Bridie Windsor is a Deputy Clinical Nurse Specialist who has organised a support day for teenagers with NF1. Read more here:
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Callum Axford’s Story
Vote for Callum's nomination for Positive Role Model (Disability) in this years National Diversity Awards!!
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The results are in for our Nerve Tumours UK film nominated at the Rare diseases film festival!
Check out our film & view the results from the film festival here:
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Noah’s Inspirational Fundraising Story
Noah Herniman, 14, raises over 1,000 Easter eggs for charity
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“Going dry in January” for NF
Janet Holloway and Val Goeghegan complete dry January for Nerve Tumours UK
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Runderpants Winchester 2020
Winchester Student Union RAG are taking on the Runderpants Mile, our unique fun run in your undies!
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A Magical Weekend
Blackpool Magic Convention 2020 supports Nerve Tumours UK this year as it's chosen charity
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Becky’s Story
From dealing with her family's NF1 to improving her fitness and running marathons, have a read of Becky's amazing story here:
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