Helpline 07939 046 030
Freephone 0300 102 17 22*

We know 26, 500 people who need your help

06 October 2022

Nerve Tumours UK joins forces with RBH to raise awareness 

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."

– RBH

Our awareness campaign is live from Friday 7th to Thursday 13th October 2022

"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."

– Karen Cockburn, Charity Director

Click this link for the locations of our digital poster campaign

Nerve Tumours UK poster locations

On location:  What doctors and the public have to say

"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."

– David Ratcliffe, Catering Manager and NF Community Member

Community Photos on Location

London King's Cross Station

London King's Cross Station

London King's Cross Station

London King's Cross Station

Manchester Piccadilly Station

Carolyn, Mel & Sam Specialist NF Nurses, Manchester Piccadilly Station

Manchester Piccadilly Station

Manchester Piccadilly Station

Karen, Manchester Piccadilly Station

Manchester Piccadilly Station

Manchester Piccadilly Station

London Clapham Junction Station

London Clapham Junction Station

Markus, London Waterloo Station

London King's Cross Station

London King's Cross Station

London King's Cross Station

London King's Cross Station

London King's Cross Station

London King's Cross Station

Mel, Specialist NF Nurse, Birmingham New Street Station

London King's Cross Station

Markus, London King's Cross Station

Alice, Fundraiser, London Waterloo Station

Juliette, Nurse, London King's Cross Station

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK