National NF2 Meeting 2025

Uniting for Progress: UK NF2 Clinical Meeting Brings Together Experts and Advocates

On Tuesday 4th November, the NF2 clinical community gathered at the Hyatt Regency in Manchester for the biannual meeting focused on NF2-related schwannomatosis. The event brought together doctors, nurses, allied health professionals, researchers, and charity representatives from across the UK - including clinical teams from all four NF2 hub centres (Manchester, Oxford, London, and Cambridge), as well as colleagues from other regions — to share knowledge, strengthen collaboration, and ultimately improve care and outcomes for those living with NF2.

Throughout the day, attendees engaged with a wide range of presentations covering
both clinical developments and lived experiences. Topics included:

• Trigeminal neuralgia and its management in NF2
• The role of psychology in supporting NF2 patients
• Emerging insights into potential links between autism, ADHD, and NF2
• The introduction of speech and language therapy into the Manchester NF2 clinic
• Inner ear schwannomas as a risk factor for early hearing loss, independent of vestibular schwannoma growth
• Research highlights from the Geoffrey Jefferson Brain Research Centre, focusing on CD8+ T cell responses in NF2-related vestibular schwannomas. This work aims to deepen understanding of tumour biology and develop immune-based treatments for NF2-related schwannomatosis
• National clinical outcomes related to bevacizumab and brigatinib

A highlight of the day was the inaugural Gareth Evans Lecture, delivered by Professor Gareth Evans, who recently retired from NHS work. His presentation
reflected on decades of progress in NF2 genetics and care, marking a significant moment of recognition and inspiration for the NF2 community.

The meeting also welcomed powerful contributions from the patient and charity sectors. Karen Cockburn, Charity Director of Nerve Tumours UK, shared updates on the charity’s current work and future plans, including how it supports both clinicians and patients. Emily Owen, award-winning author and charity ambassador, gave a moving and personal account of her experience living with NF2, echoing feedback from the wider patient community.

Clare Goddard (CEO) and Joanne Ward (COO) from NF2 Biosolutions UK & Europe also spoke about patient perspectives and ongoing research into next-generation biomedical treatments and potential cures.

The day concluded with breakout sessions, giving clinicians the opportunity to share experiences and discuss future collaborative projects aimed at improving NF2 care across the UK.

These conversations are vital for fostering innovation and ensuring that care continues to evolve in response to both clinical evidence and patient needs. This meeting was a powerful reminder of the strength of the NF2 community — not only in clinical expertise, but in compassion, advocacy, and shared purpose. We’re proud to be part of a network that is working tirelessly to improve lives and pushforward the boundaries of NF2 care and research.