Neurofibromatosis type 1 and type 2
Neurofibromatosis type 1 (Nf1) and type 2 (Nf2) are two distinct genetic conditions unrelated to one another, although they share the same name. Both are complicated to understand and can vary in how they affect individuals of all ages.
The role of the neurofibromatosis specialist adviser
Nerve Tumours UK are a charity supporting individuals and their families affected by neurofibromatosis (Nf). In partnership with the NHS, the charity funds a small group of hospital based specialist advisers. These advisers can offer accessible information and expertise directly to families, individuals and the professionals working with them. This may be at the point of diagnosis, when there is a health or other social or education dilemma, or when a decision needs to be made.
The advisers can also work directly with professionals, offering information and negotiating extra support for children.
The adviser works with the medical team to offer a seamless service, linking and informing all support services including social services, education and other voluntary service providers. They can also draw in appropriate community-based resources.
The service of the specialist adviser is free and confidential, and they are available to anyone with Nf.
Contacting an Nf specialist advisor
Referrals can be made directly to Tracey Kenyon.
023 8120 6166
Tracey Kenyon
Wessex Clinical Genetics Service
G level, Mailpoint 627
Princess Anne Hospital
Coxford Road
Southampton
SO16 5YA