NeuroEndocrine Cancer Australia

09/06/2026

Gaynor talks of her neuroendocrine cancer diagnosis, and the inequity in care that is dependant on the type of cancer that patients are diagnosed with, along with the symptoms she experiences as a NET patient.

That’s the inequity neuroendocrine cancer patients face every day and it’s exactly what your donations fund NeuroEndocrine Cancer Australia to fight.

Your tax-deductible donation before June 30 keeps that fight going.

🔗 You can donate via our website https://fundraise.neuroendocrine.org.au/donate

Because no one should face neuroendocrine cancer alone.

04/06/2026

31,000+ Australians can't wait for equitable cancer care.

Neuroendocrine cancer patients still can’t access treatments that other cancer patients get through the PBS.

Your tax-deductible donation before June 30 funds our advocacy to change that.

👉🏽Donate today and make a difference. https://neuroendocrine.org.au/tax-time/

03/06/2026

If you or someone you love has been diagnosed with Neuroendocrine Cancer, it can feel overwhelming, especially with so little information readily available.

Support groups are a great way to tap into local knowledge, hear about helpful doctors and specialists, and connect with others who truly understand what you're going through.

✨ NECA Support Groups happen around the country each month, both face-to-face and virtually.

Come along, ask questions, share your experience or just listen.

🟡 For more details, visit our website https://neuroendocrine.org.au/support-resources/

02/06/2026

NeuroEndocrine Cancer Australia held a NET Patient Forum in Canberra on Saturday, 16th May 2026.

Watching this forum, you'll hear from Meredith Cummins, Dr Ankit Jain talking about 'what treatments, when?', Dr Natalia Kolareva demystifying PRRT and CNC Catherine Trevakis providing valuable updates on treatments and cancer services.

Should any questions arise while watching this forum, please contact our NET Nurse team on 1300 287 363.

NeuroEndocrine Cancer Australia held a NET Patient Forum in Canberra on Saturday 16th May 2026. Watching this forum you'll hear from Meredith Cummins, Dr Ank...

01/06/2026

Showcasing Our Specialist Support Services

This year, we welcomed two new specialist NET Nurses in Tasmania and Western
Australia, bringing our care closer to patients who have long needed it most. We
have now expanded and have dedicated support groups in Launceston and Hobart,
meaning more NET patients than ever are receiving face-to-face support in their
own community, alongside our national telehealth service.

Demand to the specialist Dietitian and Counsellor also remain incredibly
strong:

Referrals to Dietitian - 179
Referrals to Counsellor - 176

To read our 2026 Impact Report, go to: https://neuroendocrine.org.au/about/impact-report/

29/05/2026

This year, NeuroEndocrine Cancer Australia continued to expand our reach and impact thanks
to the incredible support of our community.

Read the 2026/2027 Impact Report here: https://neuroendocrine.org.au/about/impact-report/

28/05/2026

A heartfelt thank you to Simone Leyden AM, Vice President of Global Patient Advocacy and Government Affairs at Telix Pharmaceuticals Limited, for organising sponsorship for 10 nurses to attend the ANZSNM 56th Annual Conference at the National Convention Centre in Canberra.

It was inspiring to learn about the latest advances in nuclear medicine and theranostics, including imaging technologies such as PSMA PET, FDG PET/CT, DOTATATE PET, and SPECT, and their expanding role in diagnosing and treating cancers such as neuroendocrine cancers, prostate cancer, and renal cancers.

The event showcased innovative developments, including novel labelling agents like monoclonal antibodies and Von Hippel-Landau ligands, which hold promise for future diagnostic and therapeutic options in neuroendocrine cancer.

Watch the video recap here: https://www.youtube.com/watch?v=K92AAbnyIrw&t=14s

26/05/2026

💙 Wellness Wednesday - Diversity and Inclusion

People living with neuroendocrine cancer (NETs) deserve care and support that is respectful, inclusive, and responsive to their individual backgrounds, identities, beliefs, and healthcare needs.

Living with NETs can be complex, making accessible and inclusive support more important than ever.

🔗Read our Diversity and Inclusion factsheet here: https://ow.ly/fNU050Z43mU

26/05/2026

This VHL Awareness Month, we’re sharing Ryan’s story 💙

Diagnosed with Von Hippel-Lindau (VHL) syndrome as a child, Ryan has faced multiple tumours, six major spinal surgeries, paralysis, rehabilitation, chronic pain, and ongoing health challenges.

But after starting Belzutifan, now available on the PBS, Ryan says he finally feels hopeful about the future again.

“Before, every MRI felt like bad news was coming. Now, after stable scans, I finally feel like I can start making plans again and actually look forward to things like travelling next year.”

Since starting treatment, Ryan’s tumour growth has stopped, with some tumours even shrinking. Most importantly, he says it’s changed his mind set and given him the confidence to enjoy life again.

Read Ryan's patient story here: https://ow.ly/i7Eo50Z43yE

23/05/2026

🦄If you're a NET patient or carer, you're invited to join us next Thursday for our National Support Group Zoom with special guest Sam Murphy - Exercise Physiologist from Rebound Health!

⏰Thursday 28th May, 2:30pm - 4:00pm AEST

▶️ Please email [email protected] for the link