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

Erin’s 24 hour charity live stream
Erin has NF1 and is raising awareness with a 24 hour live charity stream to Shine A Light on NF
Read More_370x280_800_600_s_c1.jpg)
Tate’s Shine A Light Bikeathon
Tate's 4th NTUK fundraiser was a Shine A Light Bikeathon, having learnt to cycle in just 3 weeks!
Read More
Access to your GP
We want to hear from you… Help us improve services by completing a quick survey
Read More
London Marathon 2024 Team NTUK
Thank you and congratulations to Team NTUK for their marathon effort
Read More
Thomas’ NF1 story
Thomas describes growing up with NF1, supporting Liverpool FC and taking on challenges with support from his wife
Read More_800_600_s_c1.png)
Meet Jessica, new Specialist NF Nurse
Jessica will work with Specialist NF Nurse Helen Tomkins, supporting families across Devon and Cornwall.
Read More
Rare Disease Day 2024
Read our update on the events and meetings NTUK attended to help raise awareness of NF
Read More
Johnathan’s story
Johnathon's family are spreading awareness of the importance of attending health checks and advocating for vulnerable people
Read More_370x280_800_600_s_c1.jpg)
Jen’s NF1 story
Jen praises the great support received since her NF1 diagnosis, allowing her to thrive & achieve a 1st class degree.
Read More