iNForm your School

iNForm your school

If you’re involved in a child’s education, as a parent, carer, teacher, SENCO or support staff, you can help their school better understand NF.

Many educators have never heard of NF, the medical group name for Neurofibromatosis Type 1 (NF1), NF2-related Schwannomatosis (NF2), and Schwannomatosis (SWN), and that lack of awareness can lead to missed support, misunderstood behaviours, and barriers to learning. Students with NF may face challenges that affect attention, learning, mobility, hearing, or emotional wellbeing.

That’s why we created iNForm your school: a professionally developed information pack that gives school staff the tools, language, and understanding they need to support a child with NF, support which is ongoing throughout their education.

Want the school to request a pack?

Sometimes, it can be easier for schools to lead the conversation and make you feel as though they are prioritising your child's educational experience. You can initiate this by using our easy School Letter, which you can download below. This letter informs the school of who we are, what we do, and how they can request a pack and find out more.

NTUK Specialist NF Nurses & school support

Helping schools understand NF - with expert back-up

Supporting a child with NF in school can be challenging, especially if staff have never encountered the condition before. That’s why Nerve Tumours UK funds a nationwide network of Specialist NF Nurses and Advisors, including a dedicated Schools Advisory Service.

These professionals are here to help families, teachers, and education staff understand how NF can affect a child’s learning, behaviour, and daily experience in school.

How our nurses can help:

• Advise teachers and SENCOs on classroom strategies, behaviour, and learning needs
• Link with education and healthcare professionals—, ncluding OTs, physios, SALTs and CAMHS teams
• Explain the link between NF and common co-diagnoses like ADHD, ADD, and ASD
• Break down the medical side of NF into practical insights that educators can act on
• Support early recognition of signs that may otherwise be dismissed as 'just part of NF'.

This joined-up approach often leads to earlier interventions, improved confidence, and better academic outcomes for the student.

Why it matters

More than 60% of children with NF1 experience learning difficulties, but many schools remain unaware of how the condition presents. Without understanding, students may be unsupported or mis-labelled. When teachers have the right information, they are better able to respond with empathy, not confusion.

By working alongside families and schools, our Nurse Advisors help ensure NF doesn’t get in the way of learning, growth, or inclusion.

The Learning Disability Register: why it matters

If your child has a learning disability, it’s important they are added to the Learning Disability Register at their GP practice. This is a national register, used by the NHS, to help ensure people with learning disabilities get the right support in healthcare settings.

What is the Learning Disability Register?

It’s a confidential list held by your GP surgery. Anyone, of any age and with any level of learning disability, can be added. Being on the register can lead to:

• Better communication and understanding from healthcare professionals
• Annual health checks tailored to your child’s needs
• Reasonable adjustments during appointments
• Priority access to certain services, like vaccines during public health rollouts

Why this matters for children with NF

Around 60% of children with NF1 experience learning disabilities. Yet without being formally recognised on the register, they may not get the extra support they’re entitled to during GP visits and other health appointments.

This isn’t just about medical care, it’s about making sure your child is seen, understood, and supported as a whole person.

How to join the Register

You need to have a discussion with the GP. The most complicated part of which, is explaining NF to a general practicioner who possibly hasn't thought about NF since their time at medical school. This is why we've created a detailed letter for you to take to them. This takes the pressure off explaining and communicating everything.

You can download the letter below or for more information and assistance please don't hesistate to get in touch with us.