News & Stories
Stay up to date with Neuroendocrine Cancer news and events happening across Australia.
Newsletters, direct invitations, events and global news. Get all your current neuroendocrine cancer information here.
Newsletter
December 2025
November 2025
October 2025
September 2025
August 2025
July 2025
June 2025
May 2025
April 2025
Latest News
NECA CEO Meredith Cummins is Now INCA President
NECA Contributes to Multidisciplinary Systemic Review
Celebrated Chef and Slow Food Pioneer Skye Gyngell Passed Away from Neuroendocrine Cancer
NECA Christmas and New Year Closure Details
Neuroendocrine Cancer Day 2025
Ipsen’s Lunch and Learn with NECA for Neuroendocrine Cancer Day
Racing for a Cure 2025
NECA Highlights Gaps in Government’s Senate Inquiry Response
Rare Cancers Roundtable
Shining a Light for World Neuroendocrine Cancer Day – Help Us Light Up Australia
Patient Stories
Alison Danis
- Gastric
My name is Ali and I live in rural/remote SA. Surgeons discovered I had NETs when they were operating on my re-occurring bowel cancer in 2017. A PET scan followed and they found an inoperable NET tumour in my small bowel (primary is unknown).
Allison, W.A.
- Small Bowel
This experience has made me a firm believer in screening, early diagnosis, and specialist NET care. I feel incredibly lucky — and grateful — that my NET was found at such an early, treatable stage.
Amanda Massey, QLD
- Pancreatic
Honestly, pre-NETs now seems like another life for me. Â The biggest change is becoming a diabetic as a result of tumours on my pancreas and it therefore being removed.
Amanda, QLD
- Appendix
For approximately seven years, my health continued to decline and impact on my quality of life, my career goals, my social life and my own self belief. I was diagnosed at age 29, and two days after my diagnosis I found out I was pregnant with my first baby.
Amelia, QLD
- Pancreatic|Pheochromocytoma|Von Hippel-Lindau Syndrome (VHL)
Von Hippel-Lindau was explained. Genetic testing was sent to Western Australia. My mum Toni, 2 sisters and I all had VHL. I have two children, both Boys. They both have VHL, Belzutifan could change their future
Amy, NSW
- Large Bowel
I was diagnosed with NEC high grade small cell neuroendocrine carcinoma in a duplication cyst of my colon. I was born with a duplicate colon I never knew about and my cancer was found within it.
Angela, ACT
- Pheochromocytoma
My ‘life saver’ was a visit from a friend , a Doctor in the Army, who noticed my face was very flushed! When I had mentioned this to previous Doctors I was told “it’s menopause”, and ignored it’s relevance.
Ann, VIC
- Pancreatic
If you are recently diagnosed with Carcinoid Cancer your shock, dismay, stress, and anxiety level does not change, but you learn to deal with it as time passes. It is worth noting how things HAVE changed and improved over the years.
Ashley, W.A.
- Pancreatic|Von Hippel-Lindau Syndrome (VHL)
I was diagnosed with Von Hippel-Lindau Syndrome (VHL) in 2016, I am classified as de novo or a mosaic as I am the first in my line having VHL, both of my parents have been tested and neither have the mutation in the Chromosome 3p25.3.
Birgitte, South Australia
- Large Bowel
I have fully recovered from the surgery and I’m feeling terrific, and I hardly think about my NET. I am extremely grateful for the early diagnosis.
Media Coverage
Racing for a Cure 2025
The Canberra Times – Living with NETs
Ryan Harding – The Northern Daily Leader – 5th July 2025
Announcing our First Patient Ambassador – Cassie Miller
NET Patient Chris, from Ballarat, Raises Awareness of Neuroendocrine Cancer
VHL in the news March 2025
Bunbury Support Group raises awareness of March4NETs
Lynda Dunstone Featured in National Media on Nuclear Medicine Access
NeuroEndocrine Cancer Australia Celebrates Groundbreaking PBS Recommendation of Life-Changing Treatment for Von Hippel-Lindau (VHL) Patients.
