Patients meet at NF2 Awareness and Support Event

The NF2 specialist team at the John Radcliffe Hospital hosted a landmark event this May 2025 dedicated to raising awareness and fostering community among individuals affected by NF2-related Schwannomatosis, a rare genetic condition previously known as Neurofibromatosis Type 2.

The event, attended by more than 60 people, was the first of its kind in over a decade bringing together patients, families, and healthcare professionals for a day of education, support, and connection.

Oxford Hospitals Charity generously funded the event and also provided lunch and refreshments.

Krystal Harry from Oxford Hospitals Charity said: "We're thrilled to support this specialist team to bring patients, families, and professionals together at such a meaningful event, and have heard so many stories about what a difference it has already made for those who attended."

The primary goal was to help patients - many of whom have never met another person with the condition - feel less isolated.

NF2-related Schwannomatosis affects approximately one in 35,000 people, and is characterised by the growth of non-cancerous tumours throughout the nervous system, particularly in the brain and spine.

While there is currently no cure, the multidisciplinary NF2 specialist team at Oxford University Hospitals NHS Foundation Trust (OUH) provides comprehensive lifelong care for both children and adults living with this complex condition, and assists their families and carers to help manage symptoms and improve quality of life.

Catherine Bailey, one of our NF2 Clinical Nurse Specialists said: "As the NF2 Service continues to grow at OUH, events like this play a crucial role in building a sense of community and hope for those navigating life with NF2.

"We hosted the event at the weekend to ensure that most of our patients could attend. All the staff involved in the event volunteered in their own time - thank you to all of them."

One of our consultant neurologists, Dr Allyson Parry, opened the event which featured a series of informative talks, including a talk on the genetics of NF2 by Dr Dorothy Halliday, one of our consultant geneticists, a talk on coping with diagnosis by Dr Rachel Woolrich, one of our clinical psychologists, and a talk from Biosolutions UK, a charity funding NF2 research.

There were seminars from Tinnitus UK on lip-reading, British Sign Language (BSL) and hearing dogs, addressing hearing loss challenges. The charity, Nerve Tumours UK, offered resources and merchandise.

To ensure accessibility, speech-to-text captioning was provided throughout the event, allowing attendees with hearing impairments to fully engage with the presentations.

Harrison, one of the patients attending the event, said: "I really enjoyed being part of the event and meeting so many lovely people.

"It made me realise that if I was just walking down the street and a stranger with NF2 passed by, I would never know, as most of us look perfectly fine. That's why I found the event so important. Thank you to everyone involved in hosting such a meaningful session."

Helga, another patient who came along, said: "This was my first time attending an event such as this and I appreciated how thoughtful and accessible it was - I even learned some new things! The talks were very informative.

"I had the honour of announcing each speaker and it boosted my confidence. It was lovely to share both my experience and hear other people's experiences - it's good not to feel alone coping with this condition.

"I loved the food. Props to the NF2 Team for being the wonderful people that they are, helping each patient with their journey."

Dan, another attendee, said "I hope this will be an ongoing thing. Along with everything else, I loved meeting Tilly, a training assistance dog from Hearing Dogs for Deaf People. I didn't think about hearing dogs being an option. The talk on hearing dog was great and it was nice to learn about ways the dogs can help.

"My Fiancée found the day to be very educational too. She doesn't have the condition, but she said that it helped her understand more about the challenges I could be facing and how to help me with them."

The OUH NF2 team includes neurologists, geneticists, ENT specialists, neurosurgeons, radiographers, hearing therapists, physiotherapists, psychologists, ophthalmologists, and a dedicated group of NF2 specialist nurses and administrators.

Established in 2010 and funded by the National Specialist Commissioning Group (NSCG), the NF2 Service at OUH is one of four national centres in the UK, alongside Cambridge, London, and Manchester.

As the coordinating centre for the South West region, the Oxford team provides specialist care to patients from Oxfordshire, the Southwest of England, and South Wales.

Gillian Hemmings, NF2 Services Lead Nurse Specialist at OUH, said: "We are pleased by the response we received following the event. The success of the event and our service is because of our dedicated multidisciplinary NF2 team.

"It was wonderful to see the attendees having such a lovely time together and bonding through shared experiences. We hope to welcome them back again soon.

"A special thank you to Oxford Hospitals Charity for their generous support in making this event happen."