Neurofibromatosis type 1 (Nf1) and type 2 (Nf2)
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
The UK charity, The Neurofibromatosis Association, supports individuals and their families affected by the diagnosis of neurofibromatosis. The charity funds, in partnership with the NHS, a small group of hospital based specialist adviser posts that are condition specific, offering accessible information and expertise directly to families, individuals and the professionals working with them.
Appropriate information and advice can be offered as needed: whether it be at the point of diagnosis, when there is a health or other social or education dilemma or supporting the family during the process of decision-making. Direct intervention with education professionals, the offer of information and negotiating extra support for children is unique to the specialist adviser role.
The specialist adviser role works with a medical specialty team, offering a seamless service linking and informing all support services including social services, education and other voluntary service providers. Drawing in appropriate complementary community based resources the role strives to ensure equitable access to all affected by Nf.
The service of the specialist adviser is free and confidential. Access to the specialist adviser is available to anyone with Nf.
How can I contact an Nf specialist advisor?
Referrals can be made directly to our local Nf specialist adviser:
Carolyn Redman, neurofibromatosis specialist adviser
C/O Wessex Clinical Genetics Service
Princess Anne Hospital