Hard to say, Harder to live with.

What is Neurofibromatosis?

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

Click here to take our CPD module on (NF1)

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


What We Offer - How Every Donation can make a Difference

When your child is diagnosed with an incurable medical condition; your entire world is turned upside down! As a parent/carer you leave the hospital/doctors with your head in a whirl. Having a child who is diagnosed with any medical condition is hard to understand and deal with, but when your child has a diagnosis that Read more...

Attending camps in the UK and USA Attending camps in the UK and USA
Days out for children & their families Days out for children & their families
Building a national volunteer support network Building a national volunteer support network
Raising awareness Raising awareness
Continuing to campaign for better care Continuing to campaign for better care
Funding research Funding research

CPD Module: Understanding neurofibromatosis type 1 (NF1)

CPD module on NF1 for professionals, created in partnership with Health Professional Academy with video produced by Health Sketch.

Click here to take the CPC module

How You Can Help

Make a one-off donation or pledge a monthly gift. Just £2 a month would make a difference.

Applications are invited for the post of Medical Advisory Board Member:

Apply for the Medical Advisory Board Member role

There are many ways in which you can raise awareness and funds, both of which are so important.

Fundraising and Awareness Ideas:

  • Host coffee mornings
  • Change light bulbs to blue or green on global awareness day
  • Fun runs – great excuse to get in shape


How You Can Help
Nicole like many other children with NF1 had a very lonely and isolated childhood

Case Studies

Nicole Martin

Nicole like many other children with NF1 had a very lonely and isolated childhood. She had no real friends and was often left on her own. It didn’t help that she was in and out of hospital almost more than she was in school and with learning difficulties she was seen as different. It was heartbreaking, this was on top of struggling with the medical side of a large tumour causing her immense pain and mobility issues.

When Nicole was 14 she found a camp for children with NF in America, this camp was run by the Children’s Tumor Foundation.


Case Studies imageCase Studies imageCase Studies image

Our Campaigns

Childhood Tumour Trust is proud to initiate and support campaigns which we feel will benefit people with neurofibromatosis type 1. We are currently campaigning for the inclusion of café au lait marks in the Child Health Record (known as the Red Book). We feel strongly that café au lait marks should be included on a body map to avoid late or even non diagnosis of NF1. The majority of children who present with 6 or more café au lait marks before the age of 5 in fact do have NF1.


Red book insert preview
Susie and Sam
Count the CALs, notice neurofibromatosis

Support and Information Group

If you are aged 25 and under and have Neurofibromatosis Type 1 or are closely related to someone under the age of 25 with Neurofibromatosis Type 1 we would love to welcome you to our friendly closed Facebook Support and Information Group full of parents and young people who know exactly what you are going through. For those older than this or with a different type of Neurofibromatosis we suggest you contact who will be able to help you, and if you live in Scotland support familes with those under 18 affected by NF.

Click here to join our Facebook Support and Information Group

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