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Home » Homepage

National Action Plan
Click here to view the 8 key actions and download the National Action Plan
Find out more
Everything you need to know about NETs
Prevention, early diagnosis and long and short term treatment.
What are NETS?
Help us to provide support
Neuroendocrine cancers affect men, women and children of all ages. There is currently no cure. Help us provide specialised care.
Donate now
NeuroEndocrine Cancer Australia
Champions for early diagnosis and a cure.
Who we are
Fundraise with us
Be it walking, running, swimming, quitting, shaving or colouring your hair - or maybe a morning tea, this downloadable fundraising guide is as easy to follow as 1, 2, 3.
Download Guide Here
Kim’s story
I was diagnosed with a high grade Neuroendocrine Carcinoma the Friday before Christmas. My prognosis was 6 months
Read Kims story
INFO4NETS
The INFO4NETs platform is an online tool that can be used to source information resources about Neuroendocrine Tumours (NETs). This tool will link you to relevant resources based on information needs identified by you, the user.
Start Now
COVID-19 Information and Resources
We want to take this time to reassure our community that we are set up for moving everything online and will continue to offer quality support services to our patients.
Read our update

The facts

%

50%

Almost 50% of patients diagnosed report being misdiagnosed with more common diseases such as IBS or anxiety.

5,437

On average 5,437 people (2,846 males and 2,591 females) are diagnosed with neuroendocrine tumours in Australia each year and this figure is on the rise.

%

60%

60% of NETs are advanced by the time patients are correctly diagnosed. Many patients have secondary growths at the time of diagnosis (stage 4 cancer).

Learn more about NETs

NETs Info

Gain access to specialised neuroendocrine information.

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I am a patient

Find patient specific resources and support.

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I am a HCP

Gain access to all HCP resources, articles and registries.

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Get involved

Want to help improve the lives neuroendocrine patients?

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Make a difference to the lives of NET patients.

How much would you like to donate?

Donations to NeuroEndocrine Cancer Australia help to raise funds for research into neuroendocrine cancer and help to provide specialised care to patients living with this disease. Diagnoses are on the rise. With your help we can work towards finding a cure.

$10

$25

$50

$100

$250

$500

$1,000

Print and send a NET patient booklet to patients and hospitals around the country.

Print and send a suite of NET patient booklets to newly diagnosed patients.

Provides telephone support through our specialist NET Nurse helpline.

Will help provide online resources for patients, carers and healthcare professionals.

Helps facilitate Living with NETs online patient workshops.

Directly contributes to a NET Patient forum, educating connecting NET patients in each state of Australia.

Allows us to help fund life changing research in to NETs via the Planet Registry App.

Introduction to the 5 Pillars

NeuroEndocrine Cancer Australia is the only not for profit medical charity providing support to Australians living with neuroendocrine cancers.

We are governed by five pillars: patient support, education, research, awareness and advocacy. These pillars have been created to give neuroendocrine cancer patients, their families and friends, a voice in the community and access to the care and treatment that they deserve.

NeuroEndocrine Cancer Australia – champions for early diagnosis and a cure

Support

Education

Research

Awareness

Advocacy

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Patient stories

Lana, NSW

Blurry vision had led to a diagnosis of Von Hippel-Lindau (VHL) disease – a condition where multiple tumours grow in various parts of the body, including the brain, spinal cord, abdominal organs, and eyes.
View Lana, NSW's Story

Simon, VIC

We need greater awareness of VHL, better education for healthcare professionals, and up-to-date resources to guide patients through diagnosis and care.
View Simon, VIC's Story

Vanessa, ACT

I was in my late twenties when I first realised something wasn’t right. I began experiencing numbness in my back, and after months of tests and uncertainty, doctors discovered a cluster of tumours in my spine. That’s when I was diagnosed with VHL.
View Vanessa, ACT's Story

Patricia, NSW

There’s such little awareness about this cancer, even among medical professionals. I’ve had GPs say to me, “I’ve never seen a neuroendocrine cancer patient in my life.” And I tell them, “You probably have — you just didn’t diagnose them.”
View Patricia, NSW's Story

Jo, QLD

In that moment, everything just crumbled. One minute, I was thinking I’d be home in a day or two. The next, I was being told I had stage-four, inoperable cancer.
View Jo, QLD's Story

Bronwyn, NSW

I encourage everyone to share their story—on the NeuroEndocrine Cancer Australia website and within their own communities—so that NETs is recognised and diagnosed earlier. I also encourage fundraising for NeuroEndocrine Cancer Australia if possible.
View Bronwyn, NSW's Story

News

Get up to date with the latest news and stories from NeuroEndocrine Cancer Australia and our community of supporters, patients and medical practitioners.
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International Nurses Day 2025

May 12, 2025

VHL Awareness Month 2025

May 6, 2025

NET Patient Chris, from Ballarat, Raises Awareness of Neuroendocrine Cancer

May 5, 2025

Help Us Grow: Connect NECA with Corporate Partners to Make a Lasting Impact

April 29, 2025

Neuroendocrine Cancer Awareness Daily Mail 5 April 2025

April 5, 2025

Neuroendocrine Cancer in Budget 2025–26

March 31, 2025

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Stay up to date on news and events, clinical trials and new research on neuroendocrine cancers.

Events

Learn about upcoming events hosted by NeuroEndocrine Cancer Australia and the NETs community.
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NET Patient Forum Adelaide

June 16, 2025: 5:30 pm
NECA invites people affected by NETs, their families and friends to our forum in Melbourne, Victoria. Registrations essential.
More Info

Living with NETs – July 2025

July 15, 2025: 1:30 pm
An online neuroendocrine cancer education program “Living with NETs” runs for 4 weeks from the 15th of July 2025 and each week’s session is for 2 hours.
More Info

Living with NETs – October 2025

October 7, 2025: 1:30 pm
An online neuroendocrine cancer education program “Living with NETs” runs for 4 weeks from the 7th October 2025 and each week’s session is for 2 hours.
More Info

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What are NETs

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