The Neurofibromatosis Type 1 (NF1) group focuses on the improving the cognitive, psychosocial and learning aspects of children and adolescents with NF1.
Neurofibromatosis type 1 (NF1) is a genetic disorder that is characterised by the growth of benign tumours along the nerves in the skin, brain, and other parts of the body. In addition to complex medical concerns, cognitive and behavioural impairments including learning difficulties are common in children with NF1 and can have a significant impact on their daily living and long term outcomes.
The NF1 group aims to improve the quality of life of children with NF1 through our research. Our researchers use a variety of approaches to understand the cognitive and psychological difficulties associated with NF1. A primary part of our research is evaluating therapeutic interventions to help children and adolescents with NF1 achieve their full learning potential.
The NF1 group works closely with children and their families under the care of The Children's Hospital at Westmead Neurogenetics Clinic to assess and monitor the cognitive development of children with NF1.
Did you know that NF1 is among the world’s most common genetic disorders occurring in about 1 of every 3,000 people. This makes it more widespread than cystic fibrosis, hereditary muscular dystrophy and Huntington’s disease.