A holistic state of the art service for all complex NF1 patients with multidisciplinary expertise.
Neurofibromatosis 1 (NF1) is an inherited neurocutaneous disease that predisposes affected individuals to the development of benign and malignant tumours. The disease mainly involves the skin and nervous system but people with NF1 can develop a wide range of rare complications.
As the clinical manifestations of complex NF1 are uncommon, two specialist centers have been nationally commissioned: St Mary’s, Manchester, led by Dr G Vassallo, and Guys and St Thomas’s, London, led by Professor Ros Ferner. The role of the National Complex NF1 service is to coordinate care for NF1 patients with complex complications and to provide expert diagnosis, including mutation testing for unusual NF1 phenotypes. We also provide effective monitoring of patients and maintain close links with all major hospitals in the North to facilitate optimum management. The service aims to provide patient and family centered care to maximize the patient’s experience within the nationally designated providers. The nationally commissioned services are seen as the leading clinical services and source of expert advice for the diagnosis and management of complex NF1 and complications within the NHS.
The service provides multidisciplinary outpatient services in order to:
The service consists of a multidisciplinary team of senior clinicians. In addition, the team has strong links with other disciplines and units that may be needed to provide care for patients with complex NF1. The multidisciplinary team consists of a neurologist (adult and paediatric), geneticists (including genetics counselling), clinical nurse specialists and a psychologist. There are formal links to: