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NF Factsheet


What is NF?

  • Neurofibromatosis (NF) is a group of genetically determined neurological conditions ; NF1, NF2 and Schwannomatosis.

How common is it?

  • Together they are as common as Cystic Fibrosis, Muscular Dystrophy and Huntington’s Disease
  • NF1 is the most common neurological disorder caused by a single gene; occurring in one in every 2,500 children born.
  • NF2 is rare, occurring in 1:25,000 – 40,000 people worldwide.
  • Studies indicate that Schwannomatosis occurs in around 1:40,000 people.

Is NF inherited?

  • All forms of NF can be inherited from a parent who has NF or may be the result of a new/spontaneous gene change.
  • Each child of a parent affected by NF has a 50% chance of inheriting the gene change and having NF. The type of NF inherited by the child is always the same as that of the affected parent, although the severity of the manifestations may differ from person to person within a family
  • NF is worldwide in distribution, affecting both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family.

Complications related to NF

Complications relating to NF1
  • Although most cases of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain, and spinal tumours; loss of limbs; cancer; and learning disabilities.
Complications relating to NF2
  • NF2 is distinguished by tumours that grow on the  nerve responsible for hearing in both ears, commonly causing deafness and severe balance problems
  • An increased risk of other types of nervous system tumours as well as severe vision problems including cataracts, retinal abnormalities and tumours of the eye socket
Complications relating to Schwannomatosis
  • Schwannomatosis is different from the other types of NF. In this condition tumours grow on the nerves that leave the spinal cord impacting the arms and legs. None of the dermal, eye and hearing complications seen in NF1 and NF2 are seen in his condition.

More Info

  • NF research may benefit an additional 100 million people (i.e. 65 million with cancer and 35 million with learning disabilities).
  • NF is not the “Elephant Man’s Disease,” although it was at one time believed to be. Scientists now believe that John Merrick, the so-called “Elephant Man,” had Proteus Syndrome, an entirely different disorder.