Our Purpose
To raise awareness and understanding of neuroendocrine cancer (NETs), both within the medical profession and the wider Australian public, and provide support to our NET community.
Our Mission
To assist and support patients and carers; lobby for new, appropriate treatments and investigations; raise awareness and knowledge of neuroendocrine cancers within the medical community and general public and encourage and support neuroendocrine cancer Research.
Our Vision
Our vision continues to be the
champions of earlier diagnosis
and a cure for neuroendocrine
cancer.
Our Values
Nurture
Cultivate growth and compassion through patient care and support.
Empower
Ignite confidence to create positive change.
Care
Demonstrate genuine concern and empathy for the well-being of others.
Accountable
Take responsibility for our actions with integrity and transparency.
Strategic Priorities
These priorities will set the goals we are aiming to achieve in the next 3 years (2025 – 2027).
2025 Goals
2026 Goals
2027 Goals
Support
Enhance NET patient support
2025 Goals
- Secure additional funding to provide ongoing regional &
rural access to services and
support - Obtain additional nurses
providing telehealth and
referral pathways as per ACNNP – Specialist Support Services
2026 Goals
- Continue to monitor effects of services and introduce additional services to meet our patients needs
- Continue to increase staff within the allocated budget (Specialist Support Services Grant)
- Lobby for ongoing funding past 2027 for Specialist Support Services
2027 Goals
- Secure national coverage of NET specialist nurses across all states and territories, including regional and rural areas
- Strengthen integrated care pathways between NECA services, hospitals and primary care
- Advocate for long-term, sustainable funding for Specialist Support Services beyond 2027
Improve accessibility of support services for culturally and linguistically diverse (CALD) communities and Aboriginal and Torres Strait Islander peoples - Develop culturally appropriate models of care to ensure equitable access to support services
Education
Increase education
2025 Goals
- Develop medical & nursing
materials and curriculums - Expand presence at relevant
medical, industry and
consumer conferences as
invited speakers - Develop PRRT education module for HCPs
- Develop Dietitian Education
Modules for implementation
nationally and internationally
2026 Goals
- Develop and expand educational resources for multidisciplinary HCPs
- Garner support for inclusion of educational materials in
relevant medical/nurse
curriculums - Maintain currency of resources – review regularly and develop additional educational resources
2027 Goals
Deliver structured national and international education programs for healthcare professionals across disciplines
Ensure ongoing review and development of patient and HCP resources to reflect best practice
Translate and adapt patient education materials to improve accessibility for culturally and linguistically diverse (CALD) communities
Partner with community organisations to deliver culturally appropriate education for CALD and Aboriginal and Torres Strait Islander audiences
Awareness
Increase awareness and visibility
2025 Goals
- Undertake ongoing awareness campaign
- Host dedicated annual event – nationally and then state events in collaboration
- Increased media exposure by expanding journalist outreach
- Development of media kit for MPs & third parties
2026 Goals
- Increased attendance over previous year s dedicated annual NETs event
- Expand use of media kit for third parties to use
- Enhance media engagement by 15% increase on previous
year’s media presence
2027 Goals
- Deliver coordinated national awareness campaigns aligned to key policy and funding priorities
- Strengthen media engagement to increase visibility of neuroendocrine cancer at a national level
- Expand use of patient storytelling to highlight system gaps and drive engagement
- Equip stakeholders, MPs and partners with tools to amplify awareness messaging
- Deliver targeted awareness initiatives to reach priority and underrepresented communities, including culturally and linguistically diverse (CALD) communities, Aboriginal and Torres Strait Islander peoples, regional and rural populations, older Australians and people living with mental illness\
- Increase reach of campaigns through culturally relevant channels and partnerships
Research
Foster advancements and innovation
2025 Goals
- Secure funding for Genetic/ Genomic Study and commencement of research
- Increased data entry to PLANET Registry
- Monitor government funding for NET Research and clinical trials
- Explore partners in non-government research
2026 Goals
- Sustainability of PLANET
- Enhance consumer education in research to increase participation in research, study and trial development
- Lobby government for equitable funding including NHMRC & MRFF
2027 Goals
- Strengthen national data capability through expansion and utilisation of the PLANET Registry
- Increase collaboration and inclusion with research, clinical and industry partners nationally and internationally
- Advocate for increased and equitable government investment in NET research
- Work with industry and government to strengthen Australia’s position as a destination for global clinical trials, improving patient access to emerging therapies
- Promote inclusive research practices to ensure representation of diverse patient populations and rare/less common conditions
Advocacy
Equity of access to treatments (PBS)
Equity of access to diagnostic investigations (MBS)
- Clinical Trial funding (dedicated stream for Rare & Less Common Cancers)
- Continued implementation of
the National Action Plan
2025 Goals
2026 Goals
- Continued implementation of the National Action Plan
- Recognition—secure ongoing funding from Government by lobbying for support services and resources
- Garner third party support to lobby on NECAs behalf for significant allocation of funding of NETs through major MRFF grant or Federal Budget item
2027 Goals
- Drive policy reform to improve timeliness of access to treatments, including HTA processes
- Maintain accountability on implementation of Senate Inquiry recommendations
- Secure national and state-based investment in NET specialist nursing and support services
- Strengthen coordinated engagement with government, policymakers and key stakeholders
- Expand advocacy influence through partnerships and third-party engagement
- Position NECA as a leading patient voice in policy, research and system reform
- Advocate for equitable access to diagnosis, treatment and care across all populations, addressing disparities in underserved communities
Financial Sustainability
Increase funding
2025 Goals
- Government funding—State & Federal for awareness & nursing program
- Clinical Trials – partnerships & applications for grants NHMRS / MRFF
- Corporate Partners
- Prebudget Submission
- Organisation Events for fundraising state and national
2026 Goals
- Philanthropic promotion
- Bequests – Gift in wills
- Organisation Events for fundraising state and national
- Corporate Partners
- Prebudget Submission
2027 Goals
- Secure sustained and diversified government funding across federal and state levels
- Expand partnerships across corporate, philanthropic and research sectors
- Grow revenue through national and state-based fundraising initiatives
- Strengthen alignment between funding opportunities and strategic priorities
- Increase investment to support expanded reach and engagement with all NET community
