Neurofibromatosis Type 1 (NF1) is more prevalent than Cystic Fibrosis, Duchenne Muscular Dystrophy, and Huntingtons Disease combined. Complications may include:

  • Tumours growing along nerves on the skin and inside the body
  • Bone Deformities/Scoliosis (eg Curvature of the spine)
  • Sight Problems/Blindness
  • Hypermobility/Mobility Issues
  • Cancer
  • Learning Difficulties (eg Dyslexia)
  • Disfigurements
  • Social Skill Difficulties (eg Autistic Spectrum Disorder)
  • Attention and Impulsivity (eg ADD/ADHD)
  • Coordination Difficulties (eg Dyspraxia)
  • 95% will have 6 or more coffee coloured patches (CafĂ© au Lait marks)

Which can lead to feeling:

  • Bullied
  • Isolated
  • Lonely
  • Low Self-Esteem
  • Chronic Pain
  • Depression
Girls with flowers on head(Black and White)

25,000 people in the UK live with Neurofibromatosis Type 1. Many of these are children and young people. Their young lives revolve around hospital appointments, consultants, scans and operations. There is no cure. However with regular check-ups and appropriate care, many people affected with NF1 can lead fulfilling lives.

Portrait photo of gillian anderson with her message over the top and signed

Childhood Tumour Trust is a growing charity whose aim is to provide opportunities for children and young people with NF1 by providing the opportunity to attend camps in the UK and USA, days out for children and their families, to raise awareness, to continue to campaign for better care, to fund research and build a national volunteer support network.

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