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Supporting children, young adults and their families up to the age of 30

Supporting children, young adults and their families up to the age of 35

Information for educational professionals

Supporting students and pupils
with Neurofibromatosis Type 1 (NF1)

Supporting students and pupils
with Neurofibromatosis Type 1 (NF1)

Understanding the unique needs of students with Neurofibromatosis Type 1 (NF1) is crucial for their success in the classroom. While some parents may prefer to keep their child’s condition private, it is important that educational professionals are aware of the potential challenges associated with NF1. With the right support, children with NF1 can thrive both academically and socially.

For some families, raising awareness among classmates and the wider school community is an important step in creating a supportive environment. To assist with this, we offer a simple and engaging PowerPoint presentation (download here) designed for very young children. This resource explains NF1 in an age-appropriate manner and can be used during assemblies or in classroom settings.

For secondary school headteachers and educators there is a PowerPoint presentation (download here)

For secondary school students, our Living with NF1 PowerPoint presentation (download here) offers an accessible and engaging introduction to NF1, helping to build understanding and inclusion among classmates.

To raise awareness, many schools opt to hold a special ‘mufti day’ where students wear blue and green – the colours representing NF1. This event not only educates students about the condition but also fosters understanding and empathy among peers.
By working together and ensuring the right support is in place, we can help children with NF1 reach their full potential in a positive and inclusive school environment.

Attendance

While regular school attendance is important, it’s essential to recognise that for many with NF1, through no fault of their own, cannot attend school every day. This may be due to necessary hospital appointments, scans, surgeries, or simply not feeling well. For a child with NF1, achieving 100% attendance is often unrealistic and the anxiety and stress from not receiving perfect attendance awards, which many of their peers may attain, can add unnecessary pressure.
It’s crucial that schools do not discriminate against students. In these cases, absences related to these conditions should be excluded from attendance records to ensure fairness and reduce stress on the child.
Cartoon of Patches in class with children

Common educational challenges for students with NF1

Children with NF1 can excel in school and often pursue higher education, though their path may have its challenges. Many will need extra support to reach their full potential, as learning difficulties are common, affecting between 50 and 80% of  children with NF1. Early identification and intervention are crucial to ensuring they receive the support they need.

Common difficulties include:

  • Low self-esteem and confidence
  • Inconsistent performance without an apparent cause
  • Concentration difficulties
  • Challenges with working memory and processing
  • Dyslexia, dyscalculia, and other learning difficulties
  • Difficulties with reading, writing, and mathematics that may be linked to dyslexia or dyscalculia

Communication and interaction

Social communication difficulties are common in people with NF1, with around 50% also having a diagnosis of Autism Spectrum Disorder (ASD) or Attention Deficit Hyperactivity Disorder (ADHD).

Nerve Tumours UK have some excellent resources for teachers