Support Information

We have information to help you and your family through your liver journey. Sometimes, the journey that parents experience is different from their child and for this reason we have developed information leaflets with hints, tips and advice for two stages of your child’s journey.

Support through your child’s liver journey

This is an introductory leaflet when your child has received a diagnosis. It covers areas such as:

  • Medical care and teams – what to expect
  • Looking after yourself
  • Information sources
  • Managing procedural distress
  • Going on holiday and school trips
  • Education and financial support
  • Support services you can access
  • Helpful tips from other parents.

This leaflet is designed so that you are able to be refer back to this information at a time that is suitable for you and your family.

Download Support Through Your Child’s Liver Journey PDF here

Supporting young people

This leaflet provides an overview of the key areas parents need to think about as their child is growing up. Key topics include:

  • Medication responsibilities
  • University/careers
  • Finances
  • Prescription charges
  • Transition to adult services
  • Support available for young people
  • Hints, tips and quotes from both parents and young people affected by a childhood liver condition.

Download Supporting Young People

Living without a diagnosis

All childhood liver diseases are rare but living without a diagnosis can be particularly difficult. We have updated our leaflet which contains advice and information for young people and families who are in this situation. Key topics include:

  • Why some liver conditions are difficult to diagnose
  • Tips and advice on coping and living without a diagnosis
  • Sources of support when living without a diagnosis

Download Living without a diagnosis

Joe's Liver Transplant Story


CLDF has produced Joe’s Liver Transplant Story to help children to understand what a liver transplant is and to learn about the processes involved.

The book is targeted at 4-8 year olds, but can also be used with younger and/or older children as a starting point for discussion. The story is designed to be used by play specialists, psychologists and parents and tells Joe’s story from liver transplant assessment right through to recovery after the transplant.

The book is suitable for: –

– Children who are going through a transplant assessment or who are on the waiting list.
– Children who have undergone a liver transplant in the past to help them understand what happened to them.
– Siblings and friends of children who have had or need a liver transplant to give them more of an insight into what will happen or what has happened.
– Other children who would like to know more about liver transplantation.

The book is available to be ordered by:-

– Parents
– Friends and families of children requiring liver transplantation.
– Healthcare professionals (including play specialists, psychologists, transplant coordinators and specialist nurses)
– Teachers
– Libraries

*If you meet one of the above categories and did not receive a book during transplant assessment, feel free to contact us for a copy for your young children.

You can order your book through the families order form, by emailing or calling 0121 212 6028.