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

A man on a mission: Onno Faber and his NF2 journey
Onno Faber - since NF2 diagnosis aged 33, Onno is a man on a mission. Article courtesy of NEO.LIFE
Read More
Kate’s NF1 Story & DanceAthon
Kate describes her son's NF1 journey and how NTUK supported them
Read More
Strictly Come Running: London Marathon Class of 2021
Congratulations to our class of 2021 London Marathon runners
Read More
Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the 2021 NHS England NF2 meeting
Read more about the England NF2 meeting - working together to improve the experience of NF2 patients
Read More
Douglas Thomson’s NF1 Story
Douglas describes life with NF1 and how losing his leg was one of the best things to happen to him
Read More
Tricia’s Wingwalk and Birthday Fundraiser for Sarah and Keith
Tricia's fundraising wingwalk in memory of her daughter Sarah who had NF1, and to remember her father Keith
Read More
Student Voice Prize 2021
The 2021 Student Voice Prize opens on 6th October! #DareToThinkRare for the 8th annual essay competition!
Read More
Centre for Appearance Research - Parent Support Materials Study
The Centre for Appearance Research is doing a study on parent support materials - can you help?
Read More