About Us

The voice of the NF community

In 1981, Trish Green took part in a BBC radio programme "Does he take sugar", and was put in touch with Clare Pepperell (Webb). Both ladies had been trying to find other families affected by Neurofibromatosis (nerve tumours), and as a result they founded “The Neurofibromatosis Association”, which first became a registered charity in 1982.

Since then, the charity has evolved to become Nerve Tumours UK, the leading voice for people living with NF, the group name for Neurofibromatosis Type 1 (NF1), NF2-related-Schwannomatosis (NF2) and Schwannomatosis (SWN) in the United Kingdom. 

By providing crucial medical and non-medical support, in the form of information, regional patient days, online communities, a network of healthcare professionals, and a national NF helpline, we help those who are living with NF to live the best life they can. 

Our vision is to improve the lives of those affected by NF.

Nerve Tumours UK provides crucial support and empowerment for those affected by NF in the UK.

NF are not limited to one group of people. Regardless of gender, age, ethnicity, sexuality, disability or wealth – if not catered for appropriately, can cause intense grief and isolation.

NF can be uncompromising, painful and punishing without the right support network. As long as the condition is around, we will strive to provide better and more targeted support. Our Nerve Tumours UK Helpline and support network is available to every region of the United Kingdom, and we endeavor to support those outside of the UK wherever possible.

We are staunch believers in equal rights and opportunities for all. We welcome input from all external organisations, teams and supporters. We provide specialist, age-appropriate support for children and teens as well as adults.

Nerve Tumours UK is the authoritative voice of NF in the UK. We achieve this by providing first class information, support and advice; facilitating and promoting innovative research, and being an advocate for those with NF.