Neurofibromatosis: a condition that’s hard to say, but even harder to live with

Neurofibromatosis: a condition that’s hard to say, but even harder to live with


The Childhood Tumour Trust and Havas Lynx Group have launched a campaign to raise awareness and funds for people living with a rare genetic condition, neurofibromatosis 1 (NF1). 

As part of the Health For All initiative from Havas Lynx Group – aiming to change inequality within healthcare by removing bias and stereotypes, shifting misconceptions, and challenging stigma – The Childhood Tumour Trust and Havas Lynx Group are aiming to get people talking about a condition that you’ll struggle to even pronounce.  

NF1 is a genetic condition causing tumours to grow on nerve endings in children and young people, its symptoms can have a huge physical and psychological impact on those affected. It’s more prevalent than Cystic Fibrosis, Duchenne Muscular Dystrophy, and Huntington’s Disease combined – yet is much less known. 

The campaign ‘Hard to say’ aims to change this. By showing unusual ways in which NF1 can sometimes be mispronounced, the campaign aims to put NF1 in the spotlight to raise awareness and funds to help those living with the condition.  

“This is a really innovative and interesting campaign and has the potential to really propel neurofibromatosis to be a household name, increased visibility of NF1 is so vital to people living with the condition and those that support them.” 

Dr Carly Jim, trustee of CTT and Senior Lecturer in Psychology, Manchester Metropolitan University 

“One of the first problems we realised when trying to get people talking about NF1 was the name itself. By creating a campaign that faces this head-on, we hope to finally raise some much-needed awareness for NF1. The more we can get people talking about the condition, the more we can help those affected by it.”   

John McPartland – Creative Director, Havas Lynx Group 

About Childhood Tumour Trust 

Childhood Tumour Trust is a growing charity whose aim is to bring children, young people and their families affected by neurofibromatosis type 1 (NF1) together, (be it virtually at the moment), provide online parental support, campaign for better care & earlier diagnosis and to liaise with schools over special educational support.