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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

Resources

At Childhood Tumour Trust, we’ve created a series of resources to help children and families navigate Neurofibromatosis Type 1 (NF1). Our three ‘Patches’ books use Patches the Giraffe, our friendly mascot, to guide children through important topics with warmth and understanding. For families who’d like to bring Patches home, the mascot is also available for purchase – please contact Childhood Tumour Trust for details.
2 children each with cuddly toy Patches
We understand that navigating a diagnosis of Neurofibromatosis Type 1 (NF1) can be challenging. Childhood Tumour Trust offers a collection of carefully designed resources to support children, families, and professionals in understanding and managing NF1. These resources aim to empower families with information and provide comfort to children as they learn about and live with NF1.

What is NF1?

This animated video provides a clear and engaging introduction to NF1, created specifically for adults and those looking to learn more about the condition.
My Child Has Been Diagnosed with NF1 – What Now? front cover
Read the book
Order a printed copy

My Child Has Been Diagnosed with NF1 – What Now?

This parent/carer guidebook offers an in-depth look at NF1 management. Created by parents for parents, it includes valuable insights and practical advice, much of which you’ll also find throughout our website, to help families with the early stages of understanding and supporting a child with NF1.
Insert for the Red RCPCH Child Development Book front cover
Read the book
Download and print the book
Order a printed copy

Insert for the Red RCPCH Child Development Book

A concise guide tailored for you to include in the Royal College of Paediatrics and Child Health Red Book, this insert provides vital information for families and healthcare professionals tracking development milestones and care needs for children with NF1.

Patches and the Very Special Diagnosis front cover
Read the book
Watch a signed narrated version of the book
Watch an animation of the story
Order a printed copy

Patches and the Very Special Diagnosis

In this gentle, child-friendly book, Patches, our charity mascot, introduces NF1 to young readers. Using kind language and illustrations, Patches helps children understand their diagnosis in a way that feels safe and reassuring. The accompanying animated version brings this story to life, making it accessible for even the youngest children.
This book is available in Braille and translated into German, Greek and Danish.
Patches and the MRI Adventure front cover
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Listen to an MRI recording
Order a printed copy

Patches and the MRI Adventure

An engaging story where Patches takes children on a journey to prepare for an MRI, explaining the process in a friendly way to help ease any worries. Alongside the story, we also offer a recording of an MRI machine’s sounds, which can be used in the background – such as during bedtime reading—to help children get accustomed to the sounds without focusing directly on them. While this recording may not exactly match the sounds each child will hear, it offers a useful introduction to ease the experience.

Patches and the Time Machine Front Cover
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Order a printed copy

Patches and the Time Machine

This gentle booklet guides children through the difficult experience of bereavement. Using a magical time-travel story with Patches, it’s designed to help children understand loss in a safe, comforting way. Importantly, this story has no connection to NF1 or life expectancy concerns; it’s a general resource to support any child dealing with the loss of a loved one.

NF1 Review checklists

These checklists for children and adults with NF1 are invaluable tools for tracking important wellness checks over time.

Download adult checklist   Download child checklist

GP Breast Screening letter

A downloadable letter to present to your GP, outlining the eligibility of women with NF1 for breast screening beginning at age 40, helping to advocate for timely preventive care.
Download breast screening letter

A generic letter for schools

An introductory letter designed to help educators understand NF1 and its implications for students.
Download generic school letter

School attendance letter

A document addressing the challenges of 100% attendance awards for students with NF1, highlighting the need for fair attendance policies.
Download school attendance letter

NF1 PowerPoint presentation

PowerPoint Presentation
Created specifically for young children, this presentation can be shared in nurseries or primary schools to promote understanding and inclusivity.
Download PowerPoint presentation