Our Impact Advocacy Neuroblastoma Australia raises funds for vital research and treatments, while uniting affected families and supporters in a common cause. Along with advocates in our community, we want to compel policymakers to prioritise neuroblastoma on the Government's agenda. At present, only 1.4% of Australian Government funding for cancer research goes to neuroblastoma. Childhood cancer, more broadly, receives only 10% of government funding. Of that childhood cancer amount, funding specifically for neuroblastoma research is just 16%. In 2022 the NHRMC invested $2.18 million in neuroblastoma research, which compares to $141 million in adult cancer research. This page details advocacy campaigns undertaken by Neuroblastoma Australia with our community members. Most of these will benefit greatly from public support and participation to amplify important lived experiences and messages so they are visible to those who have the power to make change happen. 2024 Request to Federal Government to Fund Access to DFMO On Friday, April 12, 2024 we advised that Neuroblastoma Australia, together with the Australian and New Zealand Children’s Haematology and Oncology Group (ANZCHOG) and Australian paediatric oncologists, have written to request that the federal government urgently consider providing interim funding for Australian children with high-risk neuroblastoma to access eflornithine, a recently approved US Federal Drug Administration (FDA) treatment. You can read the full statement here: https://www.neuroblastoma.org.au/news/call-to-federal-government-for-equitable-access-to-dfmo To help us raise the profile of our request to Hon Mark Butler MP (Minister for Health and Aged Care) to fund $15 million for interim access over 2 years, you can help us by writing a letter to your Local federal MP about the situation and how pressing it is as families in Australia need access to the drug now and can't afford to wait till the drug has gone through the lengthy approval process. We have drafted a letter with help from a family with political experience and it is attached below. If you'd like to help raise the visibility of this incredibly important issue, please include the following in your letter: If you are a family affected by neuroblastoma, please include details of your own personal story, so it’s not the same letter from everyone and it shows your connection. When writing, please ensure you include your home address so the Federal MP knows you are in their electorate. If you are unsure who your Federal MP is, you can double check by going to https://electorate.aec.gov.au and you can find their email address here https://www.aph.gov.au/Senators_and_Members Please download the letter from the following link and update and send as soon as possible. If you are a family affected, please download and update this letter here If you are a member of the public, not affected by neuroblastoma, but keen to support families affected by this devastating cancer, please use this letter here If you have any questions or queries about the letter, please contact Neuroblastoma Australia CEO, Lucy Jones: [email protected] Thank you for your support Senate Inquiry 2023 - Equitable Access to Diagnosis and Treatment On 14 June 2023, the Senate referred the following inquiry to the Senate Community Affairs Committee Equitable access to diagnosis and treatment for individuals with rare and less common cancers, including neuroendocrine cancer. You can find details here about this Inquiry. The Inquiry will review the experiences of those seeking treatment for rare and less common cancers, including barriers to screening and diagnosis due to cost and geographic location, and adequacy of support services post diagnosis. The full terms of reference can be found here. Neuroblastoma Australia Official Submission Working with community advocates and experts with formal submission experience, Neuroblastoma Australia drafted a submission letter to reflect the views of the charity regarding treatment accessibility. If you are a parent, guardian or close relative of a child with neuroblastoma, we welcome you to read our letter as follows: Neuroblastoma Australia Submission to Senate Neuroblastoma Australia CEO, Lucy Jones' opening statement to the panel can be read here. Submissions are now closed. We will provide relevant updates on the Senate's findings as they arise. Manage Cookie Preferences