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.

Recommendations and Results.

Nerve Tumours UK is not responsible for any data management and content of the research.

Nicola’s NF2 Journey

Nicola creates her own YouTube videos to help promote NF2 awareness. Find out more about her NF2 journey here:

Making the Future of Work inclusive of persons with disability

Check out James' recent presentation at a conference in Geneva highlighting issues of "face equality" in the workplace

The Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing

Find out more about the debate recently undertaken at The Royal Society here:

Appearance Matters: Prof Diana Harcourt and Maia Thornton

Find out both Diana's and Maia's views on their work and the importance of their work for people with NF:

Jane Frances

Here Jane Frances tells us how findings from psychological research can help parents and teachers of children with NF

Sarah’s Story

Sarah has NF1 and works full time for the NHS check out her intriguing story here

Laura’s Story

Read about Laura's experience of undergoing surgery to remove a tumour from her spine here:

Visible Difference Equality Law Research: summary of findings

Find out more about the results here:

The Galloway Family and their “amazing” four year old Ruby

Have a read about the incredibly brave young Ruby Galloway (NF1) and check out their previous and future fundraiers.

Share your Covid-19 Story - Survey Results