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.
| Country | Status |
|---|---|
| 🇺🇸 United States | No longer qualifies as an orphan disease — prevalence now exceeds 243,000 cases. The FDA’s own phrasing—“orphan status to drugs and biologics for rare diseases that meet certain criteria”—makes it clear that “rare disease” is the qualifying condition, and the numerical threshold (<200,000 people in the U.S.) is the defining criterion for that designation. |
| 🇬🇧 United Kingdom | 10th most common cancer in England, with a 371% rise in incidence since 1995 |
| 🇦🇺 Australia | 7th most prevalent cancer, affecting more people than ovarian, kidney, or liver cancer |
These figures reflect improved diagnostics, rising awareness, and longer survival (thus the prevalance 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.
Outdated metaphors like “zebra” obscure the biological complexity and diversity of NENs.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.
| Old Framing | Updated Messaging |
|---|---|
| “NENs are under-recognised and biologically complex” |
| “We’re zebras” | “We’re uncommon but not rare — not easily boxed, not easily ignored” In any case, as the archaic term ‘zebra’ means a diagnosis rather than a person, who would use the term “We’re diagnoses” in any context! Let’s stop degrading awarness impact with old and outdated thinking. |
“Rare = forgotten” | “Common enough to matter, complex enough to demand expertise” |
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 witrh the NHS on a NEN pathway.
Awareness campaigns: It’s time to move from “rare disease” sympathy to more mainstream and scientific approches including the need for enhanced precision medicine urgency (this is already a work in progress).
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