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Genetic and Rare Diseases Information Center (GARD)


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Your Question

My sister and I have neurofibromas and dermal eccrine cylindromas. Do you have ANY information on these tumors or know where I can get more information? 

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is a neurofibroma?

A neurofibroma is a non-cancerous (benign) tumor that develops from the cells and tissues that cover nerves.[1] Some people who develop neurofibromas have a genetic condition known as neurofibromatosis (NF). There are different types of NF, but type 1 is the most common.
Last updated: 7/20/2015

What is neurofibromatosis type 1?

Neurofibromatosis type 1 (NF1) is an inherited condition characterized primarily by changes in skin color and the growth of benign tumors along the nerves of the skin, brain, and other parts of the body. The severity and specific features can vary greatly from person to person.[2][3] NF1 belongs to a group of related conditions called the RASopathies. These conditions have some overlapping features and are all caused by genetic changes that disrupt the body's RAS pathway, affecting growth and development.[4] NF1 is caused by changes (mutations) in the NF1 gene and is inherited in an autosomal dominant manner. In about 50% of cases, it is inherited from an affected parent. Other cases result from a new (de novo) mutation, occurring for the first time in people with no family history of NF1.[2][3] Treatment is based on the signs and symptoms present in each person.[2][5]
Last updated: 7/19/2015

Where can I find more information on neurofibromas?

More information on neurofibromatosis and neurofibromas is available from the following resources. Click on each link to view more information. 

Children's Hospital of Boston

The National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health (NIH), has an information page on neurofibromatosis.

You can also contact NINDS for information on neurofibromatosis:

NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
Toll-free:  800-352-9424
Phone: 301-496-5751
TTY: 301-468-5981
E-mail form:
Web site:

Last updated: 6/1/2016

What is a cylindroma?

Cylindromas are non-cancerous (benigntumors that develop from the skin.[6] They most commonly occur on the head and neck and rarely become cancerous (malignant).  An individual can develop one or many cylindromas; if a person develops only one, the cylindroma likely occurred by chance and typically is not inherited.[6] They usually begin to form during mid-adulthood as a slow-growing, rubbery nodule that causes no symptoms. The development of multiple cylindromas can be hereditary and is inherited in an autosomal dominant manner; this condition is called familial cylindromatosis.[6]  Individuals with the inherited form begin to develop many, rounded nodules of various size shortly after puberty. The tumors grow very slowly and increase in number over time.[6]
Last updated: 2/18/2015

Where can I find more information on dermal eccrine cylindromas?

An article from Medscape Reference provides information on cylindromas. You may need to register to view the article, but registration is free. To access the link, click here
Last updated: 6/1/2016

See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.