Fact Sheets
Neurofibromatosis Type 1
Overview
Neurofibromatosis Type 1 is a relatively common inherited disorder that affects 1 in every 3000 people.
Patients usually have a particular skin pigmentation (‘café au lait spots’), neurofibromas (nodules on the skin) and bone deformities, including scoliosis of the spine, and are at risk of bone fractures due to osteoporosis.
Patients with neurofibromatosis type 1 are prone to developing both benign and malignant tumours.
These tumours include:
- brain and eye tumours (glioma)
- tumours of the nerves
- gastrointestinal stromal tumours (GIST)
- phaeochromocytoma
- small bowel (duodenal) Neuroendocrine Cancer
- breast cancer, leukaemia, sarcomas.
- pancreatic tumours
Helpful Resources
Booklets & Guides
About NETs
Booklets & Guides
Acronyms & Terminology for Neuroendocrine Cancer Patients
Booklets & Guides
Associated Conditions
Clinical Trials
AUS-NET – Neuroendocrine Tumours
To improve patient quality of life and develop a cost-effective system that can be implemented across other rare cancers in the future.
Other Resources
Australian Patient Travel Subsidy Scheme
Booklets & Guides
Basic Testing sheet for GastroEnteroPancreatic (GEP) Neuroendocrine Tumors (NETs)
Educational Videos
Brisbane NET Forum 2019 Hereditary Syndromes AMANDA LOVE
Support Groups
Cancer Council Telephone Support Group
Fact Sheets
