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Neurofibromatosis service

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

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 four 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 our clinic and are also available to give advice via telephone and email. 

We're committed to research into neurofibromatosis and our current projects include:

  • improving the diagnosis of malignant peripheral nerve sheath tumours
  • sleep disorders
  • 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.

Find out how to get involved in research.

Contact us

Tel: 020 7188 3959

Nurse advice line: 020 7188 9976

Opening times: Monday – Friday, 9am - 5pm.

How to find us

Neurofibromatosis service
1st floor, Southwark Wing
Guy's Hospital
Great Maze Pond
London SE1 9RT

Map to Guy's Hospital, Southwark Wing

©  Guy's and St Thomas' NHS Foundation Trust
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