Helpline 07939 046 030

Support for Parents
of children with NF1

Nerve Tumours can be daunting in many ways for new and experienced parents, but Nerve Tumours UK is here to help.

Support for Parents

Families need a variety of support when it comes to Neurofibromatosis. Whether a member of the family has had a recent diagnosis, or someone who has had a long-standing diagnosis is considering having a new family themselves, there are a lot of questions to be answered. We are happy to provide guidance and reassurance where possible, to help navigate these turbulent issues. 

Understanding the genetic inheritance of NF1

NF1 is caused by a change in the structure of a gene. Each person has about 30,000 genes in their body. Genes are the set of instructions within cells that tell the body how to grow, develop and function. Most genes come in pairs, so we all have two copies of the NF1 gene. If a person has NF1, one of these copies will have an alteration or spelling mistake and when someone with NF1 has a child, he or she passes on one of his or her two copies of the gene: either the normal one or the copy with the NF1 alteration. If the normal copy of the gene is passed on, the child is very unlikely to have NF1. If the altered NF1 gene is passed on, the child will have NF1. Therefore, every person with NF1 has a 50:50 or 1 in 2 chance of passing the condition on to any of his or her children, boys or girls (similar to tossing a coin).

For adults with NF1 who are planning their family, there is no way of telling beforehand how mildly or severely a child who inherits NF1 will be affected. The decision whether or not to have children is a very personal one for a couple and may depend on personal experience of NF1.


It is not usually possible to offer tests in pregnancy but couples considering this need to be referred to a genetic centre to discuss this with a genetic doctor and counsellor before contemplating a pregnancy. The doctor and/or counsellor will discuss the condition, the risks and the options available, so that the couple has all the information they need to make a decision.


Teachers can visit our Support for Teachers page (parents please feel free to visit this page too).


Some helpful information and resources