In Australia, over 13,000 people live with neurofibromatosis, a group of complex genetic conditions that cause tumours to form on nerves, under the skin and deep in the body – affecting 1 in every 2,000 births or about 4 million people worldwide.
The signs, symptoms, and management of each type of NF are different and there is no way to predict how mildly or severely someone will be impacted.
Roughly half of all cases arise in families with no history of NF and it can affect anyone regardless of ethnicity, gender, or family history.
The Children’s Tumour Foundation (CTF) is the only support service in Australia for those with NF and provides free services while advocating for change and investing in research.
With the support of their partner Alexion Pharmaceuticals, CTF undertook a burden of disease study into NF and its effects on patients, specialists and the Australian healthcare system, making recommendations to governments across Australia to improve outcomes.
To support the launch of this report, London Agency was provided engagement support to meet with Parliamentarians to improve awareness of NF and seek funding from Government for CTF’s support programs.
London Agency secured multiple meetings with members of government, opposition and the crossbench in Federal Parliament, allowing CTF staff to speak directly to decision-makers and those that can directly question them about the need to support NF patients.
This led to the client having improved understanding of their cause in Parliament and the ability to correspond directly with interested parliamentarians and staff about their cause and requests of Government.
With support from London Agency and industry partners, CTF were also able to build their report into a strong foundational document for improvements into the treatments of NF, with key actions from the Commonwealth, State and Territory Governments.
Through this collaborative process, CTF was able to launch of CTF’s NF Burden of Disease Report by Health Minister Mark Butler and Shadow Minister for Health, Senator Anne Ruston in Parliament House, alongside stakeholders, fellow parliamentarians, and most importantly, patients.
The patients also had the opportunity to hold roundtables with Minister Butler, Senator Ruston and the Assistant Minister for Health, Ged Kearney.
Alongside this launch, Minister Butler also announced an additional $300,000 for CTF, allowing them to continue their patient support programs.
