Hereditary angioedema care across selected health systems in the Balkan Peninsula area: policy gaps, practice variation, and actionable recommendations
Hereditary angioedema is a rare but potentially life-threatening disorder in which outcomes depend not only on correct diagnosis and effective medicines, but also on how health systems organize referral, laboratory confirmation, emergency pathways, reimbursement, home treatment, and long-term follow-up. Selected health systems in the Balkan Peninsula area provide a particularly informative setting for health-system comparison because neighboring countries with active hereditary angioedema expertise differ substantially in rare-disease governance, registry maturity, diagnostic infrastructure, treatment coverage, and patient-organization capacity. This Policy and Practice Review synthesizes international guidance, published regional literature, comparative country information from the Balkan Experts in Angioedema: Consensus and Ongoing Navigation (BEACON) initiative, and advocacy-informed implementation insights to assess current care delivery in Albania, Bosnia and Herzegovina, Bulgaria, Croatia, Greece, Romania, Serbia, Slovenia, and Türkiye. Across the region, the most consistent problems are prolonged diagnostic delay, unequal access to complement and genetic testing, approved-but-not-reimbursed modern therapies, hospital-only access to rescue medication, uneven use of home treatment and self-administration, incomplete emergency preparedness, and variable registry and advocacy infrastructure. Countries with stronger alignment between policy frameworks, specialist centers, registries, reimbursement pathways, and patient organizations appear better positioned to deliver guideline-concordant care, whereas fragmentation at any point in the care pathway reduces the practical value of therapeutic advances. The review argues that the main barriers to equitable hereditary angioedema care across the included health systems are now predominantly regulatory, financing, organizational, and educational rather than scientific. We therefore propose actionable recommendations for ministries and payers, specialist centers and professional societies, emergency-care systems, registry stakeholders, and patient organizations, with the goal of converting regional heterogeneity into a structured quality-improvement agenda.