Imagine having a medical condition that’s very rare and that most people have never heard of?  It can be really isolating.

So when the team who specialise in care for a condition called NF2 – or to give it its full name Neurofibromatosis Type 2-related Schwannomatosis – asked us to help bring their patients together to raise awareness and make connections, we knew this was something important to support.

And last weekend, we were proud to help a special event Leonardo Hotel in Oxford happen, bringing together 60 patients, young and old.

NF2-SWN is a rare genetic condition that causes the growth of multiple tumours in the central nervous system, impacting both the brain and spinal cord. The majority of people with this condition experience hearing loss, whereas others may face challenges such as vision impairment, chronic pain, balance issues, tinnitus, mobility difficulties, and the need for complex surgeries to remove tumours.

Patients in Oxford are treated at the Churchill Day Treatment Unit (DTU), but our patients in Plymouth, Southampton and Bristol receive their treatments locally, at the satellite centres.  

This event was an opportunity to bring them together in a supportive and informative environment.

The day was a huge success, with a diverse range of expert speakers, including clinical leads, a consultant geneticist, NF2 Psychologist and a consultant neurologist. Topics covered included the latest developments in genetics and NF2 research, as well as other support, including Hearing therapy dogs, Tinnitus UK, British Sign Language, hearing loss specialists, and mobility aid providers.

There was also an “Ask the Experts” session, where patients had the opportunity to pose questions directly to the panel of healthcare professionals.

Funmilayo Awonaike, NF2 Service Coordinator from Neurosciences, said: “This event was created to help our patients feel less isolated in their condition. It gave them the chance to engage with us, ask questions, and feel more supported.

“During the lunch break, attendees were encouraged to chat with one another. As this is quite an isolating condition, it was great to see the youngsters swapping numbers and connecting in this way.

"We were thrilled with how the day turned out and hope to make this a bi-annual event. We’re incredibly grateful to Oxford Hospitals Charity for their generous support in making it all possible."

Krystal Harry, Programme Assistant, said, “We were proud to be able to support this important event for the NF2 team. They are so passionate about wanting to raise awareness and to be able to support their patients, and as a charity, we were so pleased that we were able to assist with this.”