Helpline 07939 046 030

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

Filter by Date
Category
Reset

Challenge 100 – Everyone’s invited

Take on 100 of anything you can think of and fundraise to support our NF community!

Read More

Ella’s editorial

Have a read of Ella's editorial as she shares her brave journey against NF1 with us!

Read More

Jo’s 160 Mile walk for NTUK!

Read Jo's Story as she prepares to take on a 160 mile epic walking challenge for Nerve Tumours UK.

Read More

A very “Happy Easter” to you all!

A message from Karen, our Charity Director, wishing you all a very Happy Easter!

Read More

Stuart & William’s Story: Turning blue for World NF Month

Check out Stuart & William's creative fundraiser for World Neurofibromatosis Awareness Month

Read More

Coordinated Care of Rare Diseases Study at UCL

Find out the results to the Coordinated Care of Rare Diseases Study at UCL

Read More

Who is exempt from wearing a face mask? UK exemptions rules explained - and how to get a hidden disabilities exemption

Find out the up to date information on face mask rules in your area

Read More

Carers Rights Day. Diane’s Story

Find out more about Diane's life as a carer and how more should be done for unpaid carers in the UK

Read More

NF1 PN Impact on Patients’ and Caregivers’ Lives

If you have NF1 with plexiform neurofibromas or you care for someone with NF1 PN help shape future healthcare support

Read More