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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NTUK attends Small Charity Week
Nerve Tumours UK attended Small Charity Week, find out more about the week and why we attended here:
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Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the National NF2 CQuinn Meeting in Manchester.
Have a read about what was talked about at this year's National NF2 CQuinn Meeting in Manchester
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Nerve Tumours UK adds BrowseAloud to their website
Have a read about the new software we have uploaded to our website in order to make it more accessible to everyone.
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11 year old inspired to run 31 miles within 8 hours for his brother who has NF
Have a read about young Will's remarkable achievement that has been inspired by Adam Jacob's story on our website
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Simon’s Story
Have a read of Simon's Story and his desire to help NF2 Bio Solutions find a cure for NF2:
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Steve Brine MP helps spread awareness for Nerve Tumours UK
The Burbridge Family recently met up with MP Steve Brine to help spread awareness for NF. Find out more here:
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Meet Tom
Tom Hazell is 37, works in IT, lives in Essex with his long-term partner, he has NF2/Schwannomatosis Find out more here:
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A Gamble Across Britain
James will be cycling the length of the country this September- that's 980 miles! Find out more here:
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Nerve Tumours UK at Her Majesty The Queen’s Buckingham Palace Garden Party
Nerve Tumours UK attended one of Her Majesty The Queen's Summer Garden Parties. Find out more here:
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