Neurofibromatosis and the role of the specialist adviser
Carolyn Redman Neurofibromatosis specialist adviser, Wessex Clinical Genetics Service, University Hospital Southampton NHS Foundation Trust, Southampton, England
Neurofibromatosis (NF) is a genetic condition that mainly involves the nervous system. There are two types: NF1 affects about one in 2,500 of the population worldwide and NF2 affects one in 35,000. Both types result in complex health problems for patients and can pose significant challenges for all those involved in their management.
Established in 1981, The Neuro Foundation is a patient-focused charity that funds a network of specialist advisers who work in partnership with the NHS to offer support and advice for families affected by NF and the professionals who care for them.
With a significant level of autonomy, the specialist adviser role is flexible in matching the needs of those affected while working cooperatively alongside the national specialist services for NF1 and NF2.
Nursing Children and Young People. 29, 7,21-25. doi: 10.7748/ncyp.2017.e776
Received: 28 March 2016
Accepted: 05 June 2017
Published in print: 11 September 2017Peer review
This article has been subject to open peer review and has been checked for plagiarism using automated softwareConflict Of Interest