The UK HAE Alliance's 1,500-2,000 figure is the prophylaxed subset of a larger 5,000-6,000 total population, not a competing total, and a 1,152-patient peer-reviewed registry confirms the lower bound from the bottom up.
Two UK HAE Alliance-derived figures appear across published sources, and they are not in conflict once the funnel is built correctly. The Alliance's total UK HAE population estimate is 5,000 to 6,000 patients. Of that total, 1,500 to 2,000 are currently on NICE TA606-commissioned lanadelumab prophylaxis, delivered through 40 NHS specialist centres, a figure that has previously been read as the total UK patient population when it is in fact the prophylaxed subset. The remaining 1,500 to 2,500 patients are attack-active, three or more attacks per year, but have never received prophylaxis, the addressable growth market rather than a switch cohort from an entrenched incumbent.
A third, independent figure strengthens the triangulation. Longhurst et al.'s 2023 national survey identified 1,152 confirmed HAE Type I/II patients across 37 UK centres, the strongest bottom-up count available because it is peer-reviewed and clinic-verified rather than charity-surveyed. It sits below the Alliance's 5,000 to 6,000 total, consistent with a registry that counts only patients actively followed at the 37 surveyed centres rather than the full national population, including those managed outside specialist care or not yet captured by any single centre. The gap between 1,152 confirmed and the 5,000 to 6,000 estimated total is best explained by the same diagnostic-delay dynamic that defines the UK market: a mean 8 to 10 year delay between symptom onset and diagnosis, driven by GP unfamiliarity with non-urticarial swelling.
UK hereditary angioedema funnel — reconciling the Alliance total, NICE-commissioned prophylaxis, and the Longhurst registry
| Funnel Stage | Population | Source |
|---|---|---|
| Estimated total UK HAE population | 5,000–6,000 | UK HAE Alliance |
| Longhurst et al. 2023 registry-confirmed (37 centres, Type I/II) | 1,152 | Longhurst et al., JACI In Practice 2023 |
| On NICE TA606-commissioned lanadelumab prophylaxis | 1,500–2,000 | NHS commissioning data / UK HAE Alliance |
| Never-prophylaxed, attack-active (≥3 attacks/yr) | 1,500–2,500 | UK HAE Alliance census / NICE TA606 unmet-need analysis |
Sources: UK HAE Alliance annual report 2023; Longhurst KL et al., J Allergy Clin Immunol In Practice 2023 (national HAE survey, 37 UK centres); NICE TA606 Final Appraisal Determination (lanadelumab), 2019; NICE TA606 unmet-need analysis.
What this model answers
Every section answers a named commercial question your team is asking, scoped to your asset.
Delivers
- The UK HAE Alliance's 5,000-6,000 total population estimate
- why the 1,500-2,000 figure is the prophylaxed subset, not a competing total
- the reconciled funnel
Delivers
- The 37-centre, 1,152-patient peer-reviewed registry methodology
- why a clinic-verified bottom-up count sits below a national charity estimate
- what the gap implies about diagnostic delay
Delivers
- The 1,500-2,500-patient never-prophylaxed pool
- NICE TA606 lanadelumab entrenchment among stable patients
- the market-growth versus switch-strategy distinction
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Commission This ModelWhat's inside
- Why the never-prophylaxed 1,500-2,500 patient pool is the addressable market, not the stable NICE TA606 base
- Pressure-tested against the Alliance-vs-registry reconciliation before the rest of the model is built out
- 5,000-6,000 UK HAE Alliance total population estimate
- Reconciling the 1,500-2,000 prophylaxed-subset figure against the total
- 1,152 confirmed patients across 37 UK centres, JACI In Practice 2023
- Why a clinic-verified registry sits below a charity-survey total
- Mean diagnostic delay and its GP-unfamiliarity driver
- How diagnostic delay explains the registry-vs-total gap
- 1,500-2,000 on NICE TA606 lanadelumab prophylaxis
- 1,500-2,500 attack-active, never-prophylaxed patients
- Which assumptions move the addressable total most
- Scenario ranges across Alliance, registry and diagnostic-delay assumptions
- Patient volume by horizon under conservative, base, and aggressive scenarios
- Revenue translation inputs
- The open questions your launch team must close before the model is finalised
- Structured for an internal forecast-review session
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How AXLRx builds this model
Prepared by MoatRx analysts.
Every AXLRx patient flow model triangulates independent sources before accepting a population figure. For UK hereditary angioedema, that means reconciling the UK HAE Alliance's charity-survey total against Longhurst et al.'s peer-reviewed, clinic-verified registry, rather than treating the two as competing counts.
UK hereditary angioedema sources: UK HAE Alliance annual report 2023 and 2022 survey, Longhurst et al., JACI In Practice 2023, NICE TA606 Final Appraisal Determination and its published unmet-need analysis.
- UK HAE Alliance total population estimate (5,000-6,000) verified against its 2023 annual report
- 1,500-2,000 prophylaxed-subset figure verified against NICE TA606 commissioning data and confirmed as a subset, not a competing total
- Longhurst et al. 2023 registry count (1,152 patients, 37 centres) verified against JACI In Practice 2023
- Never-prophylaxed population (1,500-2,500) and the 8-10 year diagnostic delay verified against UK HAE Alliance census and NICE TA606 unmet-need analysis
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