The NF2 specialist team at the John Radcliffe Hospital organised the event earlier this month, focusing on NF2-related Schwannomatosis, a rare genetic condition previously known as Neurofibromatosis Type 2.
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 provides comprehensive lifelong care for both children and adults living with the complex condition.
The NF2 specialist team at the John Radcliffe Hospital hosted an awareness event earlier this month (Image: OUH/X) Attended by more than 60 people, the event was the first of its kind in more than a decade, bringing together patients, families, and healthcare professionals for a day of education, support, and connection.
Catherine Bailey, one of the NHS trust’s NF2 clinical nurse specialists, said: “As the NF2 service continues to grow at Oxford University Hospitals, 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.”
The event featured a series of informative talks, including one on the genetics of NF2 by Dr Dorothy Halliday, a consultant geneticist, and a talk on coping with diagnosis by Dr Rachel Woolrich, a clinical psychologist.
There were also seminars from Tinnitus UK on lip-reading, British Sign Language, and hearing dogs, addressing hearing loss challenges.
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.”
The OUH NF2 team includes neurologists, geneticists, ears, nose, and throat specialists, neurosurgeons, radiographers, hearing therapists, physiotherapists, psychologists, ophthalmologists, and a dedicated group of NF2 specialist nurses and administrators.
The Oxford team provides specialist care to patients from Oxfordshire, the southwest of England, and South Wales.
Oxford Hospitals Charity funded the event and 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.”