What Is Neurofibromatosis?

Nerve Tumours UK have again joined forces with RBH Creative Communications, for a fifth successive year, to raise awareness of Neurofibromatosis via a new digital media campaign.

"In planning this year's digital campaign, we asked ourselves what, most of all, we wanted to achieve. The answer was simple and obvious. We need more people to know what Neurofibromatosis is and to know how to find our help. That led us to a simple campaign concept, asking the straightforward question 'What Is Neurofibromatosis?' Most people will not know the answer!

"But what do we all do nowadays, when we do not know the answer? We look it up! It is only by increasing the wider public perception and appreciation of NF, and raising its profile, that we can hope for continued and increasing support for the NF Community.

"Over recent years, we have been really fortunate to work with the creative team at RBH and their generous support of our work helps unlock this kind of large-scale awareness drive. RBH's passion for what we do, along with their collaborative approach, helps us to highlight NF more widely, showcasing our support services for those with the condition.

"I'm always delighted to hear the warm, positive response to the campaigns, both from the NF Community and those finding us for the first time as they pass through UK rail hubs or see our adverts elsewhere, so I am very much looking forward to seeing what comes of this year's campaign!" Karen Cockburn, Charity Director

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.

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.

"Walking through UK Rail Hubs and the London Underground, you might encounter striking new digital billboards that pose the simple but vital question: "What is Neurofibromatosis?" This bold campaign for Nerve Tumours UK aims to combat the lack of awareness surrounding a condition that affects over 26,500+ people in the UK.

"The visual heart of the campaign is an illustration of the human nervous system. To represent the often-invisible reality of chronic pain associated with the condition, the artwork features a ‘glowing’ animation that pulses at the nerve endings. The intention of this glow is to spark curiosity and empathy in passers-by.

"By highlighting the physical complexity of the condition, the campaign motivates the public to look beyond the long name and discover the human stories behind it.

"We at RBH are immensely proud to have partnered again with Nerve Tumours UK on this project. Shedding light on such an important cause through creative storytelling is at the core of what we do, and we’re thrilled to help amplify their voice." RBH Creative Communications

The campaign will run across 27 rail hubs from 16-23 May 2025, covering both World NF Awareness Days on May 17 (NF1) and May 22 (NF2) respectively.

#MakeNFVisible

The campaign features on billboards at these railway stations: Birmingham New Street Station, Brighton Station, Bristol Temple Meads Station, Cambridge Station, Edinburgh Waverley Station, Liverpool Lime Street Station, London Blackfriars Station, London Bridge Station, London Charing Cross Station, London City Thameslink Station, London Elephant And Castle Station, London Euston Station, London Kings Cross Station, London Stansted Airport Station, London St Pancras Station, London Waterloo Station, Manchester Piccadilly Station, Nottingham Station, Oxford Parkway Station, Sheffield Station

Share our awareness campaign on your social media or take a photo on location.
Tag @nervetumoursuk with #MakeNFVisible in your posts

World NF Month 2026 'What Is Neurofibromatosis?' Campaign
 

If you or anyone you know is affected by NF, then please get in touch.

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

On Tuesday or Thursday, you can speak with the Head Office team, between 9am-5pm on 020 8439 1234, and they can book you a callback appointment with one of our Specialist NF Nurses.

Outside of these hours, and if you think it is an emergency, please don't hesitate to contact your GP or go to your nearest A&E Department for immediate professional support.

For further information on anything to do with NF, please visit our Help Section.