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
Crazy Nanna Hazel & Evie
4 year old Evie's NF1 diagnosis impacted the whole family. Hazel shares Evie's story from a grandmother's perspective
Read More2024 Friedrich von Recklinghausen Award
Professor Rosalie Ferner, Trustee and Member of the Nerve Tumours UK Medical Advisory Board receives this year's award
Read MoreBecome a Trustee
Nerve Tumours UK are looking for at least two new trustees to join the Board. Find out more
Read MoreGuy’s Hospital NF Centre Coffee Meetings
Guy's Hospital Neurofibromatosis Centre Coffee Club 2024
Read MoreLiz’s NF1 story: This is the real me
Liz describes growing up with NF1, difficulties at school, spinal surgery and raising awareness by writing a poem about NF.
Read MoreStronger Together Rare Conference
Read this review of the conference and find out where to access further support
Read MoreGisela’s NF2 story
Gisela has NF2 & has a positive outlook on life, she has just completed a 265km walk during World NF Awareness Month
Read MoreOxford’s John Radcliffe Hospital celebrate NF2 Awareness Day
We set out to promote and educate people about NF2 & the service offered in Oxford & Southwest Region for patients
Read More