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If you have Neurofibromatosis, we're here to help you.
Find out moreNeurofibromatosis & COVID-19 (Coronavirus)
Find out moreOver 26,500 people are depending on you. (No pressure.)
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Find out moreWorking 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 9am to 5pm on 07939 046030.
On the other days of the week, the head office team can be contacted from 9am to 5pm 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.
Find out more about nerve tumours
What is NF1?
About 25,000 people in the UK have NF1, a genetic condition that causes Nerve Tumours to grow where they shouldn't.
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What is NF2?
NF2 is a rare genetic disorder that is present at birth, though signs do not usually appear until the teens or twenties.
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What is Schwannomatosis?
A very rare condition sharing some features with NF2, but people rarely develop growths on hearing and balance nerves.
Find out moreKieran'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
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The International Rare Disease Showcase 1st – 3rd February 2022
The International Showcase is a unique & important event, with interactive sessions taking place from 1st-3rd February 2022
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Grace’s NF1 story - Nothing stops me
Grace tells us how her NF1 hasn't stopped her from being active and achieving her goals
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Mia’s NF1 story
Bridie & Warren describe their 17 month old daughter Mia's diagnosis with NF1
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