We have been designated as one of the four specialist centres for the management of NF2 by the National Specialised Commissioning Team (NSCT), the part of the NHS that deals with organising care for people with rare diseases.
We cover Cambridge, East Anglia and The Midlands. It means that people who have been diagnosed with NF2 have access to a team of people with the specialist knowledge and experience necessary to provide the best care.
We hold the NF2 team meeting and outpatient clinic on the second Monday of each month.
There is an additional NF2 neurology clinic on the third Friday of each month.
In addition to the service provided at CUH, satellite clinics run in Birmingham (three times a year); Nottingham (twice a year); and Leicester ( once a year) for suitable patients and we can provide you with more information about this as required. In some cases, you may be the first person in your family to be diagnosed with NF2 (De Novo), or in other cases you may be aware of other people within your family who also have the condition.
NF2 is characterised by benign (non-cancerous) tumours that occur on nerves within the body, in particular on both balance and hearing nerves (known as vestibular schwannomas or acoustic neuromas).
This can cause deafness and balance issues over time. Other benign tumours may also grow elsewhere in the body such as on the lining of the brain and spine (meningiomas); and under the skin (neurofibromas).
Some people with NF2 also have cataracts or problems with vision from a young age.
We are able to provide you with detailed written information about NF2 if you would like to know more.