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

Online – Accessibility – We have the tools to help!
The NTUK website has accessibility tools to give you easier access to online & digital content
Read More
My life with Pheo
This story, written by someone with NF1, describes symptoms leading to a phaeochromocytoma diagnosis
Read More
Resources Survey: Initial Diagnosis 2023
We received many responses to our survey asking what would you have found helpful after your initial diagnosis
Read More
Community Fundraising Call Out
Calling all community fundraisers - we need your help, please!
Read More
Owen family Awareness Event
The event featured guest speaker Prof. Meena Upadhyaya OBE, Member of our Board of Trustees & Medical Advisory Board
Read More
Running for Wilbur
Tim is running the Guildford 10k in October, to show support to his son Wilbur who has NF1
Read More
Alice’s NF studies
Alice is researching healthcare experiences of individuals with NF1 for her Genetic & Genomic Counselling MSc
Read More
Centre for Appearance Research - The Parenting Toolkit
Research evaluation to find out how effective ‘The Parenting Toolkit’ is at supporting parents of children with NF
Read More_370x280_800_600_s_c1.jpg)
Celtic Crossing NTUK fundraiser
On Wednesday 28 June, a team of 8, led by Paul Aubery, paddled from the Isles of Scilly to Sennen Cove in Cornwall.
Read More