Related Support Services
It’s important to seek support from family, friends, health professionals or other services to help you, your child and your family cope with cancer.
Your child’s treatment team can assist you to access support services and we have listed a range of options below. For additional specific information about childhood cancer, contact any of the major children’s hospitals and networks in your state or territory.
Visit our Connecting with other families area for ideas on how to get involved with our neuroblastoma community.
Children’s Cancer Foundation has developed a Family Support Alliance directory to connect families of children with cancer to services and information provided by credible not-for-profit organisations.
Information about neuroblastoma (Australian)
- Australian Government Children’s Cancer Website
- Neuroblastoma Downloadable Fact Sheet from the Australian Government
- Children’s Cancer Institute
- Living with Children’s Cancer
- Cancer Advisor
- Centre for Genetics Education
- Kids guide to cancer App from Camp Quality
- John Hunter Children’s Hospital Cancer Service
- Key points to know about neuroblastoma PDQ Neuroblastoma Treatment
Information about neuroblastoma (International)
- CureSearch (US) – Neuroblastoma in Children information area
- National Cancer Institute (US) – Children with Cancer: A Guide for Parents
- Children’s Oncology Group Family Handbook
- PDQ® Pediatric Treatment Editorial Board. PDQ Neuroblastoma Treatment. Bethesda, MD: National Cancer Institute (NCI) USA.
- Patient information publications from the National Cancer Institute including Children with Cancer: A Guide for Parents
- St Baldrick’s Foundation – what is neuroblastoma article
- What Is Neuroblastoma? American Cancer Society
- Key Statistics About Neuroblastoma American Cancer Society
- What’s New in Neuroblastoma Research? American Cancer Society
- Neuroblastoma survival rates based on risk groups American Cancer Society
- About and key statistics downloadable PDF – American Cancer Society
- American Cancer Society’s Cancer Statistics Center – American Cancer Society
- American Cancer Society
- American Cancer Society – questions to ask your child’s cancer care team
- Neuroblastoma Society (UK)
- Neuroblastoma Parent Handbook – Neuroblastoma UK
- Cure Search (USA)
- The Advances in Neuroblastoma Research Association
- The Children’s Neuroblastoma Cancer Foundation (USA)
- Neuroblastoma a Handbook for Families – Association of Pediatric Oncology/Haemotolgy Nurses
- Children’s Cancer and Leukemia Group (CCLG UK) – large range of downloadable and free publications
- The Children’s Oncology Group (based in USA)
- eBook Lucy has a Tumour – UK charity CLIC SARGENT
- International Society for Pediatric Oncology
- Grace Kelly Childhood Cancer Trust – (based in UK) – download booklets for children
Family Support Alliance
Family related information from the Cancer Council
- What is cancer? Cancer Australia
- Key statistics Cancer Australia
- Australian Childhood Cancer Statistics – Cancer Council (QLD)
- Cancer Australia’s National Cancer Control Indicators website – how common is childhood cancer
- The Cancer Council Australia. Call the Cancer Council Helpline from anywhere in Australia for the cost of a local call on 13 11 20.
- A Summary of Childhood Cancer Statistics in Australia (from 1983 to 2014) produced by QLD Cancer Council
- Cancer Council (NSW – talking to kids about cancer)
- Cancer Council (QLD – cancer in the school community)
- Cancer Council (TAS – children, adolescents and young adult services)
- Cancer Council (SA – counselling and mindfulness)
- Cancer Council (WA – services and programs)
- Cancer Council (NT – online resources)
- Cancer Council (ACT – information and support)
- Cancer Council (VIC – during and after childhood cancer
Information from Australian Hospitals
- Peter Mac Cancer Centre (VIC) Paediatric Oncology
- The Royal Children’s Hospital Melbourne (Chronic illness and school)
- The Royal Children’s Hospital Melbourne (What do I tell my friends?)
- Paediatric Integrated Cancer Service (Coming off treatment parent handbook)
- Kids Cancer Service John Hunter Hospital
- Cancer Centre for Children, Children’s Hospital Westmead information includes:
- Women’s and Children’s Hospital Adelaide:
- Podcast – Dr Geoff – Dr Geoff from Westmead hospitals podcasts. He explains treatment well and particularly each drug.
Financial and emotional support
- Make a Wish
- Red Kite: Support and information for children and young people with cancer and their families.
- Kids Guide to Cancer App: Free app that supports kids who have a parent, sibling, friend, or loved one with cancer.
- Camp Quality
Services and programs are specifically designed to help children aged 0-13 cope with the daily ups and downs of dealing with cancer including family fun days, school education and support services, including:- Family Camps: Camp Quality Family Camps give families much-needed time back—to relax, reconnect, and share stories with others going through something similar.
- Family Getaways: Family Getaways are designed for any Camp Quality family needing a breather from the intensity of the cancer experience.
- Emergency Respite Program: For families experiencing severe mental distress following a cancer diagnosis or facing the heartbreaking reality of a child or parent’s palliative care or bereavement.
- Starlight Foundation: Wishgranting for seriously ill children and their families,
- Livewire: Livewire is an online community specifically for teens (aged 12-20) living with a serious illness, disability or chronic health condition. 12 to 20 years
- Hoxby: Global freelance agency offering remote and flexible paid work options
Palliative care and bereavement support
- NSW Paediatric Palliative Care Programme
- Australian Paediatric Palliative Care
- Feel The Magic Foundation (childhood bereavement support)
- Support with grief and bereavement (Redkite)
- Video for bereaved parents (Redkite)
- Connect group for bereaved parents (Redkite)
- Sydney Children’s Hospital Bear Cottage – family support services:
Books
- Redkite Bookclub – Books about cancer for children, parents and medical professionals.
- Cancer Advisor – Reliable information for families of children with cancer, and young people under 25 with a diagnosis.
- Book – Childhood Cancer: A Parent’s Guide to Solid Tumour Cancers
- Book – My Cancer by Angus Olsen
- Bereavement books for children – Grace Kelly Childhood Cancer Trust
If you have had a good experience with a support service and think that other families would benefit, please email us at info@nb.org.au.
Parent's Guide to Neuroblastoma
Our Parent’s Guide is designed to support parents and carers after a child’s diagnosis, with clear information about neuroblastoma, treatment, and possible side effects.
Access the guide below, or request a hard copy by emailing info@nb.org.au
Neuroblastoma Fact Sheet
For more information, you can download the full Neuroblastoma Australia’s Neuroblastoma Fact Sheet.