Neurofibromatosis service

Providing diagnosis, management and ongoing care for our patients

Our service

We provide care for children and adults with complex and non complex neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2) and schwannomatosis. 

For information about our children's service, see the Evelina London Children's Hospital website|.

NF1, NF2 and schwannomatosis are inherited conditions that have a major impact on the nervous system and can result in tumour growth.

We are the UK's leading centre for complex NF1, and one of 4 national centres for NF2. 

We are an internationally recognised centre for the diagnosis of malignant peripheral nerve sheath tumours in NF1, using PET/CT| with glucose (fluorodeoxyglucose).  

Our neurofibromatosis specialists work across many areas. See our team page| for more information.

Our clinical nurse specialists support patients when they come to clinic| and are also available to give advice via telephone and email.

Clinical research

We are committed to the research of neurofibromatosis types 1 and 2, in collaboration with other national and international neurofibromatosis specialists. Current projects include:

  • improving the diagnosis of malignant peripheral nerve sheath tumours using methionine PET/CT (methionine forms body proteins)
  • sleep disorders – a significant problem in neurofibromatosis type 1
  • optic pathway glioma – we are currently evaluating the best way to diagnose and treat this tumour which can eventually lead to blindness in some patients with neurofibromatosis type 1
  • quality of life in neurofibromatosis– we are assessing the impact of complex inherited diseases on quality of life. This will help to evaluate the effect of new treatments.