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
Ragbir’s London Marathon
Ragbir is the Paediatric Lead for NF1 in Leeds and is running the London Marathon
Read MoreRare Disease Day 2023
NTUK joined in with Rare Disease Day 2023, helping raise awareness of how better coordination of care can improve lives.
Read MoreAshley’s NF1 story
Ashley loves red pandas, he's a 32 year old IT Specialist and has NF1. He is running a half marathon to raise NF awareness
Read MoreGuy’s & St.Thomas’s Monthly Care Awards
NF paediatric nursing team, Mandy and Katrina win the Guy’s and St Thomas’ Hospital November CARE Award 2022
Read MoreCost of Living Crisis - Initiative
NTUK have co-signed an open letter to the Chancellor of the Exchequer on the cost of living
Read MoreLiving with NF1: psychological impact & experiences
Research: Understanding the reality of the NF1 journey from diagnosis to daily life, and the emotional impact it has
Read MoreKian’s NF2 Blog
Kian shares his NF2 journey and his inspirational path - training to swim in the para-olympics
Read More