About Neurofibromatosis (NF)

NF affects approximately 1 in every 2,000 births 

Neurofibromatosis (NF) is a group of genetic conditions that cause tumours to grow on nerves throughout the body. and impacts an estimated 4 million people worldwide. NF includes neurofibromatosis type 1 (NF1) and schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN), formerly known as neurofibromatosis type 2 (NF2).

Anyone can be born with NF. It affects each person differently, and its signs and symptoms can vary widely- even within the same family. It impacts 4 million people worldwide.

What Causes Neurofibromatosis (NF)?

Neurofibromatosis (NF) is caused by a change (mutation) in a gene that plays a role in how nerve cells grow and function. In about half of all cases, NF is inherited from a parent who has the condition. When a parent has NF, each child has a 50% chance of inheriting the gene change.

In the other 50% of cases, NF occurs as the result of a spontaneous (new) genetic mutation. In these situations, there is no family history of NF.

NF is not caused by anything a parent did or did not do.

There are different types of gene changes associated with NF. While certain mutations may influence how NF presents, the condition can affect each person differently even among members of the same family. 

Frequently Asked Questions (FAQ)

NF brings up a lot of questions – let’s start with the most common…

Resources

We’ve curated a collection of resources for adults, parents and families, and healthcare professionals.