Redman Carolyn
Wessex Clinical Genetics Service, University Hospital Southampton NHS Foundation Trust, Southampton, England.
Nurs Child Young People. 2017 Sep 11;29(7):21-25. doi: 10.7748/ncyp.2017.e776.
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.
神经纤维瘤病（NF）是一种主要累及神经系统的遗传性疾病。它有两种类型：NF1在全球约每2500人中就有1人患病，NF2则是每35000人中就有1人患病。这两种类型都会给患者带来复杂的健康问题，并且会给所有参与其治疗的人员带来重大挑战。神经基金会成立于1981年，是一个以患者为中心的慈善机构，它资助了一个专家顾问网络，这些顾问与英国国民医疗服务体系（NHS）合作，为受NF影响的家庭以及照顾他们的专业人员提供支持和建议。专家顾问角色具有很大的自主性，在与NF1和NF2的国家专科服务机构合作的同时，能够灵活地满足患者的需求。
