The charity offers a comprehensive range of services, centred around a unique network of Specialist Neurofibromatosis Nurses who provide expert clinical care and advocacy. Support includes a confidential national helpline; community and peer networks connecting those who have lived through similar experiences; specialist guidance for schools and young people; and trusted information to help families navigate complex diagnostic pathways – whether immediately post-diagnosis or as needs change over time. Nerve Tumours UK also works with medical professionals to advance care and supports research to improve health outcomes.
“Their support has been a lifeline for my family. Having a Specialist Nurse who truly understood the condition gave us clarity when we felt completely lost. I often wonder how we would have managed the uncertainty without Nerve Tumours UK.”
- Family supported by the charity
"Growing up, I felt completely isolated and didn’t know anybody else with NF. I found Nerve Tumours UK and read other people’s stories. If it had not been for the charity, I think I would still have felt very, very alone.”
- Individual supported by the charity
Nerve Tumours UK has a strong emphasis on expert clinical support, patient-led advocacy, and raising awareness. As the key UK charity for this group of conditions, it plays a crucial role in ensuring early diagnosis and empowering families, while striving for a future where those with nerve tumours receive the understanding and care they deserve.
Learn more about their work
here.
