Reframing Neuroendocrine Neoplasms Beyond “Rare”

Neuroendocrine neoplasms (NENs) have outgrown the “rare disease” label. e.g. Across the U.S., UK, and Australia, they now rank among the most commonly diagnosed cancers — yet they remain under-recognised in mainstream healthcare circles, often misdiagnosed in primary and secondary care, but continue to be medically complex requiring specialist input which often arrives late.

The Global Reality – examples

These figures reflect improved diagnostics, rising awareness, and longer survival (thus the prevalence figures) — but they also expose a critical gap: prevalence has increased, but understanding has not appeared to keep up. Some of you might add that more specialist centres are needed and this is certainly true in many countries. Now, some people say to me “but my type is rare” and that might be numerically accurate. However, the most common cancers in the world are breast, lung, colorectal (bowel), prostate, and stomach. All of them have rare sub-types but that does not make them rare cancers.

Why “Rare” No Longer Fits

Outdated metaphors like “zebra” obscure the biological complexity and diversity of NENs. Many patients are furious about this focus. We are beyond that now and have been for some time.
Delayed diagnoses remain common, despite growing case numbers. If we keep telling people it’s rare, they won’t think of it.
Specialist care is still limited in many countries, even as patient populations grow.

Why This Matters for Advocacy

Regulatory shifts: e.g. In the U.S. NENs no longer qualify for orphan drug incentives (on paper) — changing the landscape for research and drug development. While we enjoy legacy programmes, we now need to exploit the mainstream use of visibility to attract funding, and commercial interest. To be honest, we have made huge advantages in this area with many new products approved and even more in the pipeline.
Policy and funding: As prevalence grows, so must investment in specialist care, registries, and education. There are advantages of becoming more prevalent
a. Increased Research and Funding Opportunities
• Public and private funders are more likely to invest in diseases with broader impact.
• Larger patient populations justify more robust clinical trials and basic science research.
b. Greater Commercial Interest
• Pharmaceutical and biotech companies are more likely to invest in drug development when the potential market is larger.
• This can lead to more treatment options, including competing therapies that drive innovation and pricing pressure.
c. Improved Diagnostic Awareness
• More common diseases are better recognised by clinicians, reducing diagnostic delay.
• Screening programs and clinical guidelines are more likely to include them.
d. Stronger Patient Advocacy and Policy Influence
• Larger patient communities can mobilise more effectively, influencing policy, reimbursement, and research priorities.
• Media coverage and public awareness tend to increase.
e. Integration into Mainstream Care
• Diseases that are no longer rare are more likely to be included in medical curricula, Electronic Medical Record (EMR) prompts, and national cancer strategies.
• This leads to earlier diagnosis, better care pathways, and multidisciplinary support. e.g. Neuroendocrine Cancer UK is already working with the NHS on a NEN pathway.
Awareness campaigns: It’s time to move from “rare disease” sympathy to more mainstream and scientific approaches including the need for enhanced precision medicine urgency (this is already a work in progress).

Awareness Messaging Ideas

“Neuroendocrine Neoplasms: No Longer Rare. Still Misunderstood.” Emphasises the shift in prevalence while keeping the focus on awareness gaps.
“It’s Time for Neuroendocrine Neoplasms: Common, Complex, Heterogenous and Still Overlooked.”
“From Rare to Recognised — But Still Not Resolved.”
“Forget the Stripes. Focus on the Science of Neuroendocrine Neoplasms.” Black and white is not a cure. We need more research and less gimmicks. We’re in the big league now.
“Neuroendocrine Neoplasms Are Rising. So Must Awareness.” See 4.
“Neuroendocrine Neoplasms: More Common Than You Think. More Complex Than You Know.” —We need more education tools in line with 1-5 above and less gimmicks.

References:

1. Dasari A, Wallace K, Halperin DM, et al. Epidemiology of Neuroendocrine Neoplasms in the US. JAMA Netw Open. 2025;8(6):e2515798. doi:10.1001/jamanetworkopen.2025.15798

2. Neuroendocrine Cancer UK – Incidence and Survival 3.

3. RACGP / NECA – NETs in Australia

Disclaimer

I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.

Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.

Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.