KFSH&RC's HAE registry finds 3.8 relatives per index case, double Europe's rate, yet fewer than 200 GCC patients are confirmed.

Hereditary angioedema is an autosomal dominant disorder of C1 esterase inhibitor deficiency or dysfunction, producing recurrent, unpredictable attacks of subcutaneous and submucosal swelling. Background prevalence is roughly 1 in 50,000, but GCC family structures, an average of three to four children per family plus extended-family clustering, mean a single index diagnosis carries direct implications for six to twelve relatives. The KFSH&RC HAE registry documents an average of 3.8 affected family members identified per index case, more than double the 1.8 average reported in Europe, making family cascade screening the highest-yield diagnostic strategy available in the region.

Untreated or under-treated GCC HAE patients experience six to twelve attacks per year, with laryngeal attacks, the life-threatening presentation carrying roughly 50% mortality if untreated, accounting for approximately 30% of episodes, a higher share than most global series. GCC emergency physicians rarely include HAE in the differential for laryngeal oedema, and general practitioners typically do not order the C4, C1-INH level, and C1-INH functional assay panel required for diagnosis unless a patient is referred to specialist allergy or immunology services. The result is an estimated 1,200 to 1,500 true GCC HAE patients, of whom fewer than 200 are confirmed.

Family screening, not new diagnostics, is the fastest way to find these patients.

Five questions this report answers:

Q1 - How many undiagnosed GCC HAE patients could family cascade screening identify after an index diagnosis?

Q2 - Why do GCC emergency and primary care physicians miss HAE in the differential for recurrent angioedema?

Q3 - What is the NPHC/MOH formulary trajectory for prophylactic therapy (lanadelumab) across GCC states?

Q4 - What diagnostic and access barriers define the addressable GCC HAE market?

Q5 - Why do laryngeal attacks account for roughly 30% of GCC HAE episodes, higher than global series?

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