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What Is Neurofibromatosis?

Neurofibromatosis is an incurable, neuro-genetic condition that causes tumours to grow on nerve endings, affecting over 26,500+ children and adults living in the UK.

Neurofibromatosis, collectively known as NF, is the medical group name for Neurofibromatosis Type 1 (NF1), NF2-related-Schwannomatosis (NF2) and Schwannomatosis (SWN).

Combined, NF is one of the most common neuro-genetic conditions, although it can still be classified as a rare condition. NF 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 one within the family.

Working For The NF Community

For over 45 years, Nerve Tumours UK has provided support and advice to help the 26,500+ children and adults in the UK diagnosed with NF, along with their carers, family members and wider support network, which can include teachers, employers and all types of healthcare professionals.

We do this through funding a unique specialist support network, comprising regional nurses, national helpline, clinical guidelines, information days, an interactive website, online communities plus medical guidelines/literature.

Our team of highly specialised NF Nurse/Advisors, based within NHS Trusts around the UK, 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! 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, plus there is a special hub for healthcare professionals to access. 

Support Our Work

Our aim is to meet the needs of the 26,500+ in the NF Community, to ensure that each and every patient has direct access to the correct care path and subsequent services, as well as helping more people to know about and better understand Neurofibromatosis.

We are 100% funded by voluntary donations, so are entirely reliant on your fundraising support. Find out how you can get involved.

Our Helpline is open on Monday, Wednesday & Friday 9am-5pm
Call 07939 046 030, Freephone 0300 102 17 22 or Email helpline@nervetumours.org.uk