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.

Nurse’s Conference 2019

Find out more about this year's conference with our Nurses here:

Nerve Tumours UK joins the “Embracing Complexity” Coalition

Find out more about the coalition we have decided to join

Researching NF1

Rory Deasy has conducted research into the treatment of children with NF1. Here he talks about his research journey.

Megan’s Journey

Megan talks about her experiences of being a student with NF and what she took away from the NF conference in San Fransico

Aldo goes to Primary School

Find out more about the book aimed at helping people understand the life of an autistic boy going through primary school here

Eva’s Races

Eva has run 3 races over the past year for NTUK, find out what has been motivating her here:

Carl’s Story in memory of his sister who had NF2

Carl recently hosted his own wrestling event in memory of his late sister, find out more on his story here:

NTUK Dolphins at the Swim Serpentine 2019

Find out more about the incredible day for all involved at Hyde Park here:

Rotary’s Summer Evening Jazz Concert in aid of NTUK

Find out more about the amazing Jazz Concert that was hosted in aid of NTUK here:

Share your Covid-19 Story - Survey Results