Neurofibromatosis 1

A boy with Neurofibromatosis 1

Picture courtesy of the Children's Tumor Foundation and Rhode Island Parent Information Network.

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For healthcare providers: Additional clinical information

Neurofibromatosis 1 (NF1) is a highly variable condition that involves many body systems.  It varies even within a family.  Most people with NF1 have a mild form.  Less than 10% have serious and lasting physical problems. Many of those problems are evident at birth or develop prior to adolescence.

NF1 is one of the most common dominant inherited genetic disorders. It occurs in about 1 in 3,000 births.  About half of children who are affected with NF1 will also have an affected parent, while the other 50% may be the only family member with NF1.

It is also known as von Recklinghausen’s Disease.  NF1 is a separate and distinct condition from NF2.  NOTE: Until the mid 1980’s there were many reports that NF1 was the condition found in the Elephant Man (Joseph Merrick).  This has been shown to NOT be the case. 

Learn more about the physical characteristics and/or symptoms of NF1.

This information was last updated in May 2020.