Rare Cancers CoP Launch – In Case You Missed It
CNSA CEO Jemma Still welcomed attendees and outlined the shared purpose behind the CoP: to create a space where cancer nurses can openly explore the challenges of rare cancer care, support one another, and improve outcomes through knowledge exchange.
Arlie Novy, Outreach and Education Manager at RCA and registered nurse, then provided an important overview of RCA’s work covering their mission to provide support, advocacy and practical resources for people living with rare cancers. She outlined the services available—including telehealth, peer support, financial navigation, and the Patient Treatment Fund, which helps people access non-PBS listed treatments.
Arlie also helped ground the conversation with important definitions:
- Rare cancers = fewer than 6 cases per 100,000 people per year
- Less common cancers = 6 to 12 cases per 100,000
Together, they make up nearly 30% of all cancer diagnoses in Australia.
What Was Discussed
Participants introduced themselves and shared their areas of practice—from survivorship services to melanoma and neuroendocrine tumour care.
The group also discussed:
- Access to off-label treatments
- Ethical considerations of the Patient Treatment Fund
- Support for culturally and linguistically diverse communities
- Gaps in education and genomic literacy
Despite the small numbers in attendance, the group were enthused by the number of people interested who couldn't attend the launch, and expressed strong interest in future topics such as genomic testing, clinical trials, fertility, and access pathways. The next CoP session will be held following the CanForum, with plans to build in guest speakers and more focused discussions. Watch this space for the next meeting date.
