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.

Adam’s Story

Adam has NF1 yet is still one of the most active and athletic people in the UK. Read about his fascinating story here:

Littlewood’s Charity Night

Have a read of yet another successful charity night hosted by the Littlewoods

Emily Owen Positive Role Model (Disability) Award Nomination

Vote for our tustee Emily Owen at this year's National Diversity Awards 2019.

Research Outlook with Prof Gareth Evans

Have a read on some of the latest research with Prof Gareth Evans

ICAEW Worcestershire Annual Dinner and Ball Fundraiser for NTUK

The ICAEW Worcestershire Annual Dinner and Ball raised an incredible amount for us this year! Find out more here:

We are Family London Marathon

Have a read of the remarkable journey the White family has undergone in support of their young daughter Gaby who has NF.

Shine a Light on Neurofibromatosis

World Neurofibromatosis Awareness Day - May 17th. Help us raise £ 26,500 for 26,500 people in the UK who have nerve tumours.

Jem Musselwhite and Rich White are fundraising by walking the Pilgrims’ Way

Jem and Rich are walking more than 100 miles to raise money for Nerve Tumours UK. Find out more here:

Meet Rachael

Rachael Reynolds is a 43-year-old mother of four, living in Huddersfield. She recently appeared in the Channel 5 programme,

Share your Covid-19 Story - Survey Results