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If you have Neurofibromatosis, we're here to help you.

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Neurofibromatosis & COVID-19 (Coronavirus)

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Working for the nerve tumours community

Nerve Tumours UK provides support and information, as well as campaigns and raises awareness on behalf of over 26,500 people in the UK who have Neurofibromatosis (NF1 and NF2) and Schwannomatosis. We’re here to improve lives for people with nerve tumours, by making sure those affected have access to the help they require.  

Additional information concerning Coronavirus (COVID-19) for people diagnosed with Neurofibromatosis

Hospital Contact 

We understand that this is a very stressful time for many people, and it still may take longer for you to contact your local NF service. This is is because many of our doctors and nurses around the UK had been redeployed to help with Covid 19 medical care and vaccinations. Please do not worry, we are here to help.

Our Helpline is open on Monday & Wednesday from 9 am to 5 pm on 07939 046030. 

On the other days of the week, the head office team can be contacted from 9 am to 5 pm on 0208 439 1234.

Outside of these hours, and if you think it is an emergency, please contact your GP, or go to your nearest A&E Department.

For further information on Covid-19 Coronavirus visit our help section. 

Kieran's Story

“I was a very happy active boy with no known illnesses. When I was 5 years old, I became very unwell with vomiting and lethargy. My parents had noticed some freckling under my arms and groin but had no idea of the significance…”

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Emily's Story

Emily is an author, speaker and workshop facilitator. Her inspiring and motivational story began when, as an energetic teenager, athlete and skilled musician, she was diagnosed as suffering from Neurofibromatosis Type 2 (NF2)…

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Latest News

Tricia’s Wingwalk fundraiser

Tricia describes her wingwalk experience in celebration of her 75th birthday and in memory of her daughter Sarah, who had NF1

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Stuart’s Schwannoma story

Stuart describes how certain symptoms led to a Schwannoma discovery

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Joy’s NF1 story

Joy describes living with NF1; her son's diagnosis and support at school; fundraising and shining a light on NF

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We
are funded
100% by
voluntary
donations

So, we really need your support. There are lots of ways you can get involved to support us and the nerve tumours community.

See how you can get involved