Building an Angioedema Center: From Vision to Reality

In this episode of All Things Angioedema, Dr. Thomas Buttgereit speaks with Dr. Mark Kačar from Slovenia about the practical, clinical, and organizational steps required to establish a dedicated angioedema center within the ACARE network. Drawing from Mark’s unique experience of helping build angioedema services in multiple countries, the conversation offers valuable insights for clinicians worldwide. They discuss:🔹 Why are specialized angioedema centers essential for optimal patient care? 🔹 What clinical expertise, diagnostics, and infrastructure are truly required? 🔹 Which ACARE criteria are most challenging for smaller or emerging centers? 🔹 How can education, registries, and collaboration strengthen national care pathways? Dr. Kačar shares lessons from Slovenia’s healthcare system, where centralized expertise is key for managing rare and complex diseases like angioedema. He discusses the importance of clinical experience, multidisciplinary teamwork, access to diagnostics and genetics, patient education initiatives, and the realities of meeting ACARE requirements. Together, they highlight how international collaboration, training fellowships, and strong doctor–patient relationships form the foundation of sustainable centersof excellence in angioedema care. Key Learnings from the Episode:Dedicated angioedema centers improve care by centralizing expertise and experience for rare diseases. Small countries such as Slowenia benefit from national referral structures rather than fragmented outpatient care. ACARE certification requires fulfillment of 32 defined criteria, many embedded in daily clinical practice. Key challenges include staffing specialized nurses, participation in registries, and access to clinical trials. Strong diagnostic capabilities, including complement studies and genetics, are essential. Training experiences at established centers accelerate knowledge transfer and best practices. Patient education events and collaboration with international patient organizations enhance care quality. Building an ACARE center is a gradual process driven by teamwork, commitment, and global networking. Chapters:00:00 Introduction to Angioedema and ACARE01:39 Mark's Journey in Allergy and Immunology05:06 Importance of a Dedicated Angioedema Center07:56 Experiences from Charité and Clinical Insights11:16 Challenges in Establishing the Center16:11 Patient Education and ResourcesDo you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.Feedback form ATA: ⁠⁠⁠⁠⁠⁠⁠⁠https://forms.office.com/e/ZWxx3D4Cmr⁠⁠