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.
Filter News

Medical Photography of dermatological conditions - research
Research study: Patient perceptions of medical photography of dermatological conditions
Read More
#BackThe1in6
Read the My Neuro Survey findings from the Neurological Alliance & sign the petition for a Neuro Taskforce to deliver change
Read More
Austin’s NF1 story
Austin's mother, Katie, describes how local biker clubs have helped to support Austin since his NF1 diagnosis
Read More
NTUK Comedy Circuit 2022
Three more dates for your diary: Manchester 14/6, Newcastle 12/7, Glasgow 14/7. Altogether now: "Happy birthday NTUK!"
Read More
RideLondon-Essex 2022
Thank you to our RideLondon-Essex 2022 cyclists! Click here for some great photos from the day
Read More
Pat’s Triathlon Challenge
Pat is taking on a 3 day triathlon style challenge to raise awareness & funds for Neurofibromatosis research & support
Read More
World Neurofibromatosis Type 2 Day and 40 Years of NTUK
A celebration and call out to get involved, ask questions and join the community with Emily Owen
Read More
Shine A Light 2022 Success!
The Shine A Light 2022 campaign had over 200 buildings around the UK & the Republic of Ireland lit up in blue!
Read More
NF1 & our Xander
Xander's parents have a unique fundraiser raffle, especially for LITRPG fans, with the aim of raising awareness of NF
Read More