06 October 2022
Nerve Tumours UK was founded 40 years ago, when two mothers of children with Neurofibromatosis joined forces, creating a valuable support network amongst families living with the condition.
Forty years on, as the leading voice for people living with Neurofibromatosis Type 1, Type 2 and Schwannomatosis in the UK, we are committed to raising awareness, providing support and making their every day better.
Awareness leads to knowledge and understanding. Most individuals are unlikely to have heard of Neurofibromatosis before diagnosis and won’t know where to find help.
Spreading awareness, about the condition and the services that we offer, is key to helping those living with Neurofibromatosis, from initial diagnosis and throughout their life, to reach their potential.
To expand our Specialist Neurofibromatosis Network beyond the current 12 Nurses & Advisors, we need to continue raising awareness of what we do.
To that end, Nerve Tumours UK have joined forces with RBH, a West Midlands-based creative communications agency.
“We are proud to be supporting Nerve Tumours UK as their marketing partner. Before our initial meeting with the team at Nerve Tumours UK, not one of us had even heard the word ‘Neurofibromatosis’ before.
It is one of the most common rare genetic disorders and yet it was not something we were at all familiar with.
What most motivated us to use our creative and marketing expertise to help raise awareness of Neurofibromatosis were the stats.
It seems extraordinary to us that there are merely 12 on-the-ground Specialist Nurses providing professional support to over 26,500 people with the condition. These stark figures, in fact, became the basis for the campaign we developed.
Using portraits and real stories of members of the Nerve Tumours UK organisation, we hope to impress upon members of the British public that this condition needs our attention, and that this charity deserves our generosity.”
RBH Creative Communication - who dares to care https://rbh.co.uk/
We only have 12 Specialist NF Nurses nationwide, looking after the 26,500 that are affected with Neurofibromatosis Type 1, Type 2 and Schwannomatosis.
So this is one nurse supporting on average 2200 people affected by these conditions.
We are incredibly proud of our unique network of Specialist Neurofibromatosis Nurses & Advisors, who are based regionally throughout the UK.
With more funding, the network will continue to grow and develop, both in terms of size and knowledge of Neurofibromatosis. Having access to a Specialist Nurse still remains a postcode lottery and our aim is to increase our services nationwide so that each patient has access to the right care and advice.
"It is shocking to learn that each of Nerve Tumours UK’s 12 Specialist Nurses looks after around 2,000 people with Neurofibromatosis. But how do you help members of the public comprehend the scale of that responsibility? We decided that the best way to do so was by graphically representing it. We are proud to support Nerve Tumours UK, and this is our second campaign promoting their efforts. Our hope is that this campaign goes a long way in raising their profile."
Our awareness campaign is live from Friday 7th to Thursday 13th October 2022
– Karen Cockburn, Charity Director
"We have purposely launched the campaign at rail hubs, where footfall will allow maximum impact, enabling us to spread the message far and wide. Not only do we need to raise the profile of Neurofibromatosis amongst medical professionals, but we also need to let the public know that we are here to help, and about the support services that we can offer for both children and adults, who are diagnosed with the condition."
On location: What doctors and the public have to say
– David Ratcliffe, Catering Manager and NF Community Member
"Over the years I have had lots of troublesome Neurofibromas removed, in some cases requiring general anaesthetic, and in one case resulting in a nasty post-operative infection. This has on different occasions, fallen under various clinical departments, from dermatologists, to neurologists to oncologists. Having access to a Specialist NF Nurse would have made this process a lot smoother and I feel I would have seen the right person in the right field. I have had various issues with joints over the years, connected to the hypermobility associated with NF1, so have seen lots of physios for treatment. Also of course, there is the reaction to the Neurofibromas all over my torso, from questions and sometimes rejection on dating sites, to more recently ‘Is that Monkeypox?’ I have learned to embrace my neurofibromas and celebrate the fact they are part of me. Coming up the escalators at Kings Cross station today, I was overjoyed to see attention being brought to Neurofibromatosis. I felt recognised."