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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London Marathon 2022
Congratulations to our 2022 London Marathon runners - thank you from the NTUK team
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Hannah’s NF1 story
9 year old Hannah is running the Junior Great North Run, so other children with NF can also have access to doctors & nurses
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Sam’s Marathon
Sam, our Specialist NF Nurse for Merseyside & the North West, is running the London Marathon - her very first Marathon!
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NF Patients Community Day
The NF Patients Community Day is on Sunday 9th October 2022 - register to attend virtually
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Appearance, Identity & Law workshop
Appearance, identity & law workshop at Queen Mary University London School of Law
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Alfred the Pirate
Seven year old Alfred the Pirate takes NF1 in his stride, and is supported by Specialist NF Nurse Mel
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Nicole’s NF1 story & skydive
Nicole shares her NF1 journey and her motivation to inspire children with disabilities to achieve whatever they want to do
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Sarah’s NF1 story & Langmead fundraising
Sarah describes her daughter Hannah's NF1 journey and organising a corporate charity day fundraiser at Langmead Herbs
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