Neurofibromatosis is pronounced neuro-fibroma-tosis and is commonly referred to as NF.  NF causes tumours to grow on nerves throughout the body. The term NF represents three distinct disorders:

• Neurofibromatosis Type 1 (NF1)    The most common genetic disorder affecting approximately one in 3,000.
• NF2- Related Schwannomatosis (NF2)    A less common form, affecting approximately one in 25,000.
• Schwannomatosis    Appears to be the least occurring form, affecting approximately one in 40,000 individuals.

Can NF be cured?

At this time, there is no approved cure for NF, but a number of promising NF clinical trials are under way. As researchers continually learn more about the underlying causes of NF and what makes tumors grow, we get closer to the development of effective treatments for NF. We are hopeful that we will be able to offer FDA approved drugs for NF in the near future.

What should someone do if they think they have NF?

Only a trained healthcare professional familiar with the condition can make a clinical diagnosis of NF. If you think you or your child has NF, contact a doctor for an evaluation.

You can download a brochure on Frequently asked Questions from the Children’s Tumor Foundation here.

Faces of NF Brochure