INFORMATION GUIDES
Information guides for parents of children with neuroblastoma
Our information resources have been written with the help of experts and parents whose children have had neuroblastoma. The guides aims to help parents and other family members of a child who has been diagnosed with neuroblastoma.
We have worked in partnership Children's Cancer and Leukaemia Group (CCLG) to produce these new resources.
A parent’s guide to neuroblastoma
“The Parent’s Guide to Neuroblastoma was the single most informative, useful and non-scary document I was able to refer to.”
‘A Parent’s Guide to Neuroblastoma’ booklet is designed for parents and carers of a child who has been diagnosed with neuroblastoma.
Treatment options for children with relapsed or refractory high-risk neuroblastoma
Our neuroblastoma booklet provides information and support for parents, and is a fully updated and revised version of 'The Parents Handbook'.
We hope it answers some of your questions and helps you to cope with some of the feelings you may have. There is information about neuroblastoma, the treatments that are used and their possible side effects. It also discusses how a cancer diagnosis can affect you, your child and the rest of the family.
About this guide
Next review: October 2023
This version has been reviewed and edited by Dr Ben Fulton (Consultant Clinical Oncologist, Glasgow), Prof Deborah Tweddle (Professor of Paediatric Oncology, Newcastle) and Dr Kate Wheeler (Consultant Paediatric Oncologist, Oxford), as CCLG expert members and Neuroblastoma UK Medical Trustees, with the CCLG Neuroblastoma Special Interest Group on behalf of Neuroblastoma UK and the CCLG Publications Committee, comprising multiprofessional experts in the field of children’s cancer. Originally written by Jean Simons and published by the Neuroblastoma Society.
Treatment options for children with relapsed or refractory high-risk neuroblastoma
Alongside our Parents’ Booklet, a factsheet has been produced, 'Treatment options for relapsed or refractory high risk neuroblastoma'.
The purpose of this factsheet is to tell you about treatment opportunities that are available in the UK for treating children with relapsed or refractory high-risk neuroblastoma.
Choosing which treatment is right for your child will depend on a number of things, including where their disease is and what treatment they have previously been given. Your child’s own doctor will be able to help you decide which is the most appropriate treatment for your child at this time.
About this guide
Published: December 2021
Next review: December 2023
This version has been reviewed and updated by Professor Deb Tweddle (Professor of Paediatric Oncology, Great North Children’s Hospital Newcastle and Neuroblastoma UK Medical Trustee), Dr Tasnim Arif (Paediatric Oncologist, Great North Children’s Hospital, Newcastle) and Dr Lynley Marshall (Consultant & Paediatric Clinical Research Lead, The Royal Marsden & The Institute of Cancer Research, London) on behalf of the CCLG Neuroblastoma Special Interest Group, the NCRI Children’s Clinical Studies Group Neuroblastoma subgroup and the NCRI Children’s Novel Agents subgroup on behalf of Neuroblastoma UK and in conjunction with the CCLG Information Advisory Group, comprising multiprofessional experts in the field of children’s cancer.
Produced in partnership with CCLG.
In 2019, Neuroblastoma UK joined forces with childhood cancer charities The Bradley Lowery Foundation and Niamh's Next Step to support more vital research into neuroblastoma.