National Patient Organisation Network (NPON) was held at the Brisbane Convention Centre on Thursday 24 July 2025 which had 50 attendees. Our CEO attended and was also invited as a key note speaker to commence the event. The presentation given was about social sustainability and equity and highlighted NECA,s experience in relation to the Senate Inquiry – Equitable access to diagnostics and treatment for individuals with rare and less common cancers, including Neuroendocrine Cancers. This also included the fact that the Senate Inquiry Recommendations were released in May 2024 and no response has been made by government in relations to the recommendations.
NECA shared the advocacy and lobbying work that has been done and is currently being done. Following there were opportunities for Q & A and then workshopping about Code of Conduct: expectations of engagement and timelines for implementation.
The next presentation was by Alex Green discussing the merger between Arthritis NSW and Arthritis Queensland to become the Arthritis Movement. The focus of this was delving into operational, strategic and long-term impact and sustainability. Q & A opportunities and further workshopping on efficiencies for organisations.
After lunch Helen Jentz from Musculoskeletal Australia spoke about leadership and considering the personal toll it can take on leading patient organisation – Q & A opportunities and a workshop session about Code of Conduct – leadership traits and expectations.
The final speaker for the event was Petrina Fraccaro from Cystic Fibrosis Queensland addressing financial sustainability and the importance of diverse financial portfolios for patient organisations – Q & A and closing workshop looking at core infrastructure costs.
It was an excellent day with much diversity of groups and interactive engagement.
