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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 30

Childhood Tumour Trust

Providing support

CTT counselling service

Please be aware that the CTT Counselling Service is not able to offer emergency support in a crisis. If you are concerned that you may not be able to keep yourself (or another person) safe, please contact your GP, or dial NHS 111 for advice. If your life is imminently at risk, call 999 or go to your hospital A&E.

CTT is pleased to be working in partnership with www.rareminds.org to offer Free, Confidential Counselling for CTT patients aged 18-30, parents and other family members aged 18+ or who care for a child with NF1 aged up to 30 who live in the UK.
Up to 12 sessions can be provided either via Zoom, or by telephone. Both evening and daytime appointments are available.
All of the Rare Minds Counselling team are trained and experienced psychotherapists who have undertaken additional training in Counselling for Rare Diseases.
As living with NF1 happens within the context of your everyday life, it’s inevitable that the ‘ups and downs’ of both impact on each other. You can talk to our counsellors about anything that you are struggling with. This might include:
  • The impact on your family relationships
  • Feeling different, lonely or isolated
  • Your relationship with health care professionals, or navigating systems
  • Dealing with difficult, unpredictable or increasing symptoms
  • Learning to become an ‘NF1 expert’
  • Coping with unpleasant tests, surgery or treatment
  • Worries about the future
  • The psychological and practical implications of inheritance
It’s not always straightforward to know why you feel as you do. CTT Counsellors provide a safe, confidential relationship to work through difficult thoughts or feelings, think about options that are open to you, and explore new ways of approaching your difficulties.

If you would like to arrange an Initial Consultation, please contact Lead Counsellor David via email david@rareminds.org marking the subject ‘CTT enquiry’.

Please be aware that the CTT Counselling Service is not able to offer emergency support in a crisis. If you are concerned that you may not be able to keep yourself (or another person) safe, please contact your GP, or dial NHS 111 for advice. If your life is imminently at risk, call 999 or go to your hospital A&E.

CTT workshops

Dealing with diagnosis for parents/carers of a child with no family history of NF1*

Part presentation, part interactive workshop, this small supportive group facilitated by Rareminds offers a friendly, informal opportunity to discuss with others who share a similar experience, how you felt (and feel) about the impact of NF1 on your life and relationships. It is a space to work through the emotional impact of receiving a diagnosis.

Dealing with diagnosis for parents/carers of a child with a family history of NF1*

Part presentation, part interactive workshop, this small supportive group facilitated by Rareminds offers a friendly, informal opportunity to discuss with others who share a similar experience, how you felt (and feel) about the impact of NF1 on your life and relationships. It is a space to work through the emotional impact of receiving a diagnosis.

Talking with your child about NF1*

Talking with your child about NF1 may not always feel easy. They may ask questions at difficult times such as when you are in a rush, or before bed. How much – and what – to say, and managing your own feelings about it all too, can sometimes feel a lot to manage.

This supportive small group workshop offers the opportunity to meet with other parents to share experiences of talking with your child about NF1, and offers some guidance and principles that can help in talking with your child about living with NF1, whatever their age.

Preparing for transition*

The move from children’s to adult services can be challenging for both parents and young people in different ways. Supporting your young person to become more independent with the care around their condition can feel a nerve-wracking task, especially when combined with the ‘ups and downs’ of the teenage years, or if there are developmental or cognitive issues involved too.

The move from children’s to adult services can be challenging for both parents and young people in different ways. Supporting your young person to become more This interactive workshop provides an informal relaxed space to share thoughts, feelings and fears about this process with other parents.

Stronger Together – an 8 week group programme

When your child is diagnosed with NF1 it can be frightening, demanding, stressful and lonely.

‘Stronger Together’ provides a supportive, confidential space to share experiences, the ups and downs, and to feel less on your own with some of the unique demands of your particular circumstances.

The sessions will be facilitated by Rareminds, and offer practical and emotional support for your well-being alongside the opportunity to create trusted bonds with other group members.

‘Stronger Together’ is an unstructured group. Topics discussed will vary, depending on group members and their particular needs.

*Subject to change as we regular monitor and evaluate workshops to best support our members.

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.
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.
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.
Read 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.

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.
Read the book
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.

Read the book
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

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