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Support for Medics (NF1)

We work with medical professionals throughout the UK and abroad to ensure that the latest information can be made available to patients and their families.

Many GP’s, paediatricians, geneticists and nurses may never have come across a case of NF1 or NF2 during their professional life. When they do, there is often a need to supply some basic information to the patient as well as to obtain the latest information about the condition.

Many medics, research professionals and health organisations look to us to continually update our archive of information, medical research and current treatment regimes for them to access when required.

If you are a medical professional and require Clinical Guidelines for NF1 or more information about the NCG Service for NF2, please email us at info@nervetumours.org.uk.

  • If you would like more information about Neurofibromatosis, our forthcoming events, or how we can help you further, please contact us on 020 8439 1234.
  • We recommend that you visit the Support Pages on this site, for our full range of detailed information sheets on NF1, NF2, Schwannomatosis and Legius Syndrome. 

Nerve Tumours UK complements the services already provided by the NHS and tries to ensure that all patients have access to health care appropriate to their needs.

All children with a diagnosis of Neurofibromatosis have health checks with a paediatrician throughout childhood. Once children reach adulthood, care is transferred to either their GP, Specialist Neurofibromatosis Clinic or other hospital-based doctor depending on their circumstances and health status.

National “Complex” NF1 Service

This is a nationally funded specialist service that aims to look after the health care needs of NF1 patients in England with rare complications that cause major health problems. There are two national centres and a multi-disciplinary team of senior doctors and nurses who co-ordinate diagnosis and long-term care of patients with complex NF1. Referral from a GP or local hospital doctor is needed to access this service; both centres also accept non-complex NF1 referrals. National funding arrangements are in place for these patients. Both centres will accept referrals from all over the UK, but patients who are not from England must have funding arrangements agreed beforehand.

The National NF2 Service

In 2010 a nationally funded service was established for patients in England with a diagnosis of NF2. The purpose of the service is to ensure patients are managed consistently and conservatively by experienced doctors within a multi-disciplinary setting and that they receive the highest standard of care. Patients from Scotland are also funded; patients from Ireland and Wales need to have agreed funding with support from their doctors.

The service is coordinated from four major clinic centres: Manchester, Cambridge, Oxford and London. Each centre has a clearly defined geographical area of responsibility and runs peripheral clinics within that area, contributing their expertise to ensure the same standard of service and care is maintained. There is a multidisciplinary team of doctors and nurses supporting all the clinics. There is a single centre at Sheffield that undertakes radiation treatment where appropriate.

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Some helpful information and resources