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.

Beth’s “Novaspers Online Dog Show”

Find out more about Beth's online dog show here:

“Charity Shave Off” for NF in Northern Ireland

Janice and her family recently held a charity shave off in Northern Ireland. Find out more about the event here:

Blackpool Magic Convention 2020

Find out more about the convention in aid of NTUK and how you can get involved here:

Reflections on 2019

Check out our reflection on what we feel was an incredibly succesful 2019 for the charity:

Helen’s Story as told by her Mum Pauline

Due to her NF1, Helen has faced several struggles. Mum Pauline has openly shared her daughter's experiences with us here:

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:

Share your Covid-19 Story - Survey Results