NeuroEndocrine Cancer Australia

NeuroEndocrine Cancer Australia NeuroEndocrine Cancer Australia's mission is to improve awareness, education, patient support, research and advocacy for neuroendocrine patients in Australia.

From 1 September, pembrolizumab, sold as Keytruda, will have expanded PBS access for eligible patients with advanced or ...
02/09/2026

From 1 September, pembrolizumab, sold as Keytruda, will have expanded PBS access for eligible patients with advanced or metastatic immunotherapy-sensitive cancers. This includes bile duct, ovarian and the rare skin cancer, Merkel cell cancer.

Keytruda was already available for 17 cancer indications but now will also be listed in combination with enfortumab vedotin, sold as Padcev, for people with stage 3 or 4 urothelial cancer, an advanced form of bladder cancer.

This treatment could impact more than 490 people per year with bladder cancer, and 700 people affected by other cancers.

Health minister Mark Butler MP said, “Keytruda is one of the most extraordinary drugs available in the country and now it is listed to help so many more Australian patients.”

Thank you to the Holman Clinic in Tasmania for supporting NET Awareness by showcasing NECA services in their waiting are...
01/09/2026

Thank you to the Holman Clinic in Tasmania for supporting NET Awareness by showcasing NECA services in their waiting area, helping raise awareness of NETs and connecting people affected by NETs with information and support.

If your local clinic has the same facilities and would like to support NET Awareness please send details through to [email protected]

If you or someone you love is navigating the journey of Neuroendocrine Cancer, you're not alone. Being diagnosed with NE...
01/09/2026

If you or someone you love is navigating the journey of Neuroendocrine Cancer, you're not alone.

Being diagnosed with NETs can be even more confusing and daunting due to the lack of information and resources readily available.

Support groups can be a wonderful way of getting local knowledge about the doctors and system more generally, as well as being a fantastic way to connect with others who have travelled a similar path.

✨ Join us at one of the September NECA Support Groups. For more details on support groups go to our website. https://neuroendocrine.org.au/patient-support-groups/

🏉🎨 Rugby League and Art side by side for NETsBronny is raising funds for NeuroEndocrine Cancer Australia through a very ...
01/09/2026

🏉🎨 Rugby League and Art side by side for NETs

Bronny is raising funds for NeuroEndocrine Cancer Australia through a very special raffle, with two incredible prizes up for grabs:

🏉 1st Prize: A framed NZ Warriors jersey, signed by the team
🎨 2nd Prize: An original framed artwork, "To the Bay", by local artist Julie Foster

🎟️ Tickets are just $5 each, or 5 for $20

Every ticket purchased helps fund vital research, support services and advocacy for the 31,000+ Australians living with neuroendocrine cancer.

Online entries close 14 September, with the draw taking place on 30 September 2026.

Shout out to Bronny's sister Francis, for her support with the fundraiser!

👉 Get your raffle tickets and support Bronny's fundraiser: https://fundraise.neuroendocrine.org.au/fundraisers/bronnymanny/rugby-league-and-art-side-by-side-for-nets

Big news from the 2026 Patients Choice Awards!Last night our team headed to the gala evening and we came home with two w...
28/08/2026

Big news from the 2026 Patients Choice Awards!

Last night our team headed to the gala evening and we came home with two wins to celebrate!

🥇 Kahlia Wolsley took out Outstanding Nurse
🥇 NeuroEndocrine Cancer Australia won Outstanding Cancer & Rare Disease Organisation

Huge congratulations to Kahlia, your tireless work educating and caring for our community shone through, and this recognition is so well deserved.

We were also proud to have Amelia Ramsay (Patient Advocate) and Amanda Stork (NECA Counsellor) representing us as finalists on the night, alongside CEO Meredith Cummins.

Five nominations and two wins from one small team, what a night for our whole community.

Thank you for seeing and valuing the work we do every day for people living with neuroendocrine cancer. 🙏

Did you know around 10% of neuroendocrine cancers are genetic? 🧬Today is Inherited Cancers Awareness Day — a timely mome...
27/08/2026

Did you know around 10% of neuroendocrine cancers are genetic? 🧬

Today is Inherited Cancers Awareness Day — a timely moment to talk about the genetic side of NETs.

The majority of neuroendocrine cancers are sporadic, meaning there's no known genetic cause. But around 10% are linked to inherited conditions, including:

🔹 Multiple Endocrine Neoplasia (MEN1 & MEN2)
🔹 Familial Phaeochromocytoma and Paraganglioma Syndrome
🔹 Von Hippel-Lindau Disease (VHL)
🔹 Neurofibromatosis Type 1
🔹 Tuberous Sclerosis

Knowing your genetic risk means access to screening and monitoring, and often earlier diagnosis and treatment.

📋 If you or a family member has been diagnosed with a NET, ask your specialist whether there could be a genetic link — especially if there's a family history of neuroendocrine cancer.

Read our full fact sheet on NETs and Genetics: https://neuroendocrine.org.au/resources/fact-sheets/nets-and-genetics-2/ or call our NET Nurses on 1300 287 363 for free, confidential support (Monday - Friday from 9am - 5pm (AEST). TIS available.

Inherited Cancers Australia

🏁Pheo Para Awareness Week 2026: The Adrenaline CircuitDriven by Resilience. Fueled by Hope.This year's theme puts patien...
26/08/2026

🏁Pheo Para Awareness Week 2026: The Adrenaline Circuit

Driven by Resilience. Fueled by Hope.

This year's theme puts patients in the driver's seat of every medical decision — and it takes a whole pit crew to get them there. Endocrinologists, Oncologists, Surgeons, genetic counsellors, researchers, and caregivers all play a part in navigating the complex circuit of pheochromocytoma and paraganglioma (PPGL): from the search for a diagnosis, through surgery and treatment, to genetic tracking and lifelong surveillance.

This week, we stand with everyone affected by pheochromocytomas (pheos) and paragangliomas (paras) — rare neuroendocrine tumours that often go undiagnosed for years.

What are pheos and paras?

🔹 Pheochromocytomas develop in the adrenal medulla, sitting atop the kidneys. They often release stress hormones like adrenaline and noradrenaline, triggering symptoms like high blood pressure, headaches, excessive sweating, or heart palpitations.

🔹 Paragangliomas are extra-adrenal tumours arising from the sympathetic or parasympathetic nervous system. Some secrete hormones and are found in the chest, abdomen, or pelvis; others grow silently, often in the head and neck.

With an average time to diagnosis of around three years, delayed or missed signs are common — that's why awareness matters so deeply.

🔗 Learn more about signs, diagnosis, genetics, and treatment: https://ow.ly/XCMi50ZAJGY

Theme introduced by the Pheo Para Alliance: https://ow.ly/FLfA50ZAJGW

Thank you to Aria Bolkus MP (pictured) for joining us at WestBeach Surf Lifesaving Club in Adelaide to support David as ...
25/08/2026

Thank you to Aria Bolkus MP (pictured) for joining us at WestBeach Surf Lifesaving Club in Adelaide to support David as he began his remarkable journey in memory of his wife, Judy, and to raise awareness and funds for Neuroendocrine Cancer Australia.

Support from our elected representatives helps bring greater attention to neuroendocrine cancer and the challenges our NET community continues to face.

We’re also grateful to 9 News Adelaide for sharing David’s story and helping raise awareness of this often under-recognised cancer.

Thank you, Aria, for standing with David and the NET community.

Read more or donate to David's fundraiser here: https://fundraise.neuroendocrine.org.au/fundraisers/davidbatterham/just-a-bit-further

Mark Butler MP Blair Boyer MP

27 August is Inherited Cancers Awareness Day.10% of NeuroEndoctrine Cancers can be inherited. Start the conversation.Fin...
24/08/2026

27 August is Inherited Cancers Awareness Day.

10% of NeuroEndoctrine Cancers can be inherited. Start the conversation.

Find out what inherited cancer risk could mean for you, your family or someone you support.

Explore the ICAD 2026 community stories, learn more about inherited cancer risk and find trusted information and support: inheritedcancers.org.au/ICAD

🦄If you're a NET patient or carer, you're invited to join us for our National Support Group Zoom.⏰Thursday 27th August, ...
20/08/2026

🦄If you're a NET patient or carer, you're invited to join us for our National Support Group Zoom.

⏰Thursday 27th August, 2:30pm – 4:00pm AEST

▶️ Please email [email protected] for the link

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