Support for Parents

Children diagnosed with NF face challenges on a day to day basis. This page provides information and resources to help parents to support the needs of their children.

We have several resources availble in our Knowledge Hub for parents of children with NF, enabling them to understand some of the problems that can affect children diagnosed with Neurofibromatosis Type 1 or Type 2.


Some of the symptoms of NF, such as tumours, deafness and a different way of speaking, can often make children with NF targets of bullying.

A parent knows their child best and will know if something is wrong. Some behaviours to look out for if you suspect your child may be being bullied include:

  • reluctance to go to school
  • being mysteriously ‘ill’ each morning, or skipping school
  • belongings getting “lost” or damaged
  • being nervous, losing confidence, or becoming distressed and withdrawn

Social Media & Cyber Bullying

Social Media, and the Internet have become an integral part of modern life, although these tools can be useful and fun, it can be difficult to protect your children online. 

Signs of cyber bullying include:

  • being withdrawn or upset after texting or being online
  • being unwilling to talk about what they're doing online or on their phone
  • spending much more or much less time texting or online
  • many new phone numbers, texts or email addresses show up on their phone, laptop or tablet

How To Help

Knowing or suspecting that your child is being bullied can be very upsetting, but there's lots you can do to help tackle the problem.

After talking to your child about the issues they are facing, it is important to notify your child’s school.  All schools are required by law to have an anti-bullying policy, and you should discuss the best plan of action to tackle the bullying with your child’s teachers.

Here are some useful links on Bullying and Cyber Bullying


Kidscape equips young people, parents and professionals with the skills to tackle bullying and safeguarding issues across the UK. Visit them here.



We are very grateful for our friends at O2 NSPCC for providing a service to help keep children safe online. You can find more information on the service here.

Connect your social media account to Thunderclap to help us to shout about NF on World NF Day 2018