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Fundraise for the 26,500+ people with NF
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Find out moreIf you have NF, we're here to help you.
Find out moreWorking for the NF community
Nerve Tumours UK funds a unique Specialist Support Network to help the 26,500+ children and adults, living in the UK, who are diagnosed with NF, the medical group name for Neurofibromatosis Type 1 (NF1), NF2-related-Schwannomatosis (NF2) and Schwannomatosis (SWN), along with their carers, all their family members and their wider support network, which can include teachers, employers and all types of healthcare professionals.
Combined, NF is one of the most common neuro-genetic conditions, although it can still be classified as a rare condition. NF causes tumours to grow on nerve endings. It manifests itself differently from person to person and so it is important that everyone is helped on an individual basis. Parents have a 50% chance of passing this genetic condition onto their child, but 50% of all diagnoses are a first diagnosis within the family.
Nerve Tumours UK funds a team of highly specialised medical professionals to support and advise all patients, on every aspect of the patient's care, not just in clinics, but in all areas of their lives. There is never a question that is not important to us!
These Specialist NF Nurse/ Advisors are based within NHS Trusts in regions around the UK, and we also fund a National NF Helpline, operated by Specialist NF Nurses for those without regional access to Specialist Services, or for anyone with an urgent need.
Our fully accessible and interactive website has a host of medical guidelines and leaflets, and there is a special hub for healthcare professionals to access.
Objective & Aims of the Charity
We are here to serve the NF Community and our core function is to ensure that each and every patient has direct access to the correct care path and subsequent services.
We are working towards a future in which the needs of everyone with NF are met, by providing a unique specialist support service, advocacy, and promoting the understanding and knowledge of the condition; and also by collaborating with associated medical professionals, the UK’s leading research universities, and other world-renowned experts.
Our aims are that people living with NF receive timely and accurate support and advice and as such:
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are better able to manage their condition;
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can access the full range of medical and social services they need;
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feel less isolated by their condition;
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experience improved quality of life;
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feel more positive about their future.
Funding
We rely totally on donations and fundraising to supply our highly valued Specialist Support Service.
Our Helpline is open on Monday, Wednesday & Friday 9am-5pm: 07939 046 030/ Freephone 0300 102 17 22 or helpline@nervetumours.org.uk.
On the other days of the week, the head office team can be contacted from 9am-5pm on 020 8439 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 anything to do with NF, please visit our Help Section.
Find out more about NF
What is Neurofibromatosis Type 1? (NF1)
About 25,000 people in the UK have NF1, a genetic condition that causes nerve tumours to grow where they shouldn't.
Find out more
What is NF2-related-Schwannomatosis (NF2)?
NF2 is a rare genetic disorder that is present at birth, though signs do not usually appear until the teens or twenties.
Find out more
What is Schwannomatosis (SWN)?
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…”
Read more
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 NF2-related-Schwannomatosis (NF2)…
Read more
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