PODCAST · education
All Things Angioedema – Learning about angioedema with Dr. Thomas Buttgereit
by ACARE, the Global Allergy and Asthma Excellence Network for Angioedema
Started by ACARE in 2023 within the ACARELevelUp program this podcast is an invaluable resource for health care professionals, and anyone interested in learning more about angioedema. Dr. Thomas Buttgereit, Head of the Study Center at Charité Berlin, discusses all forms of angioedema, their pathophysiology, burden and treatment strategies with experts from all over the world. All opinions expressed are those of the faculty. This content should not be taken as medical advice and is for informational purposes only. Learn more about ACARE here: https://acare-network.com/
-
50
Early Diagnosis of HAE in Newborns
In this episode of All Things Angioedema, Dr. Thomas Buttgereit speaks with Dr. Lili Voloncs-Mindszenthy from Semmelweis University, Hungary, recipient of the Young Investigator Award at the Global Angioedema Leadership Conference (GALC) 2026. They discuss her groundbreaking research on improving the early diagnosis of hereditary angioedema (HAE) in newborns. They discuss:🔹 Why is diagnosing HAE in newborns particularly challenging? 🔹 Which complement biomarkers can reliably indicate HAE from birth? 🔹 Why are C1 inhibitor levels and function more informative than other complement factors? 🔹 What are the limitations of current diagnostic approaches, including genetic testing?🔹 How can early diagnosis improve patient outcomes and family screening? 🔹 What are the next steps in validating these findings for clinical use? Dr. Voloncs-Mindszenthy shares insights from her study using umbilical cord blood samples, identifying consistent patterns in C1 inhibitor levels and function that may allow for much earlier diagnosis of HAE. The episode highlights the potential to move diagnosis closer to birth and improve early intervention strategies. Key Learnings from the Episode:Diagnosing HAE in newborns is challenging due to an immature complement system. Early diagnosis is crucial, especially in families with known HAE history. C1 inhibitor antigenic levels and function show consistent patterns in HAE newborns. These parameters may serve as reliable early biomarkers for HAE.Other complement factors such as C3 and C4 show high variability and are less reliable. Genetic testing is useful but not always readily available or practical. Umbilical cord blood testing offers a practical early diagnostic opportunity. Larger studies are needed to establish newborn-specific reference ranges.Early detection can improve patient management and enable family screening. The research highlights a promising step toward diagnosing HAE from birth. Chapters:00:00 Introduction to Angioedema and the Conference Highlights05:15 Lily's Background and Research Journey09:55 Insights from the Global Angioedema Leadership Conference14:07 Research on Diagnosing HAE in Newborns18:29 Future Directions and ConclusionDo 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
-
49
HAE Awareness and Diagnosis in the Middle East
In this episode of All Things Angioedema, Dr. Thomas Buttgereit speaks with Prof. Maohamed Abuzakouk, Chair of Allergy and Clinical Immunology at Cleveland Clinic Abu Dhabi, about the evolving landscape of hereditary angioedema (HAE) care in the United Arab Emirates and the wider Middle East region. With more than three decades of experience in allergy and immunology across Ireland, the UK, and the Gulf region, Prof. Abuzakouk shares valuable insights into how awareness, diagnosis, and treatment of HAE have developed in recent years. They discuss:🔹 How does hereditary angioedema typically present in patients in the UAE and are there regional differences compared to Europe or North America? 🔹 What challenges contribute to delayed diagnosis, including misdiagnosis as allergic angioedema or surgical abdominal emergencies? 🔹 How do cultural and genetic factors, such as higher rates of consanguinity, influence HAE detection and family clustering? 🔹 What initiatives have improved physician awareness and education across the region in the past decade? 🔹 How do regional consensus statements help adapt international HAE guidelines to local healthcare systems? 🔹 Which modern therapies for on-demand treatment and long-term prophylaxis are currently available in the UAE? 🔹 Why are national and regional HAE registries essential for improving diagnosis and patient care in the Middle East? Prof. Abuzakouk highlights the remarkable progress made in the UAE, including improved access to diagnostic testing, modern therapies, and international collaborations with networks such as GA²LEN and ACARE. At the same time, he emphasizes the importance of continuing efforts to identify undiagnosed patients, establish regional registries, strengthen patient advocacy groups, and expand education for healthcare providers. The discussion concludes with a clear vision for the future: eliminating diagnostic delays, improving quality of life for all patients with HAE, and ultimately achieving zero preventable mortality from the disease. Key Learnings from the Episode:Hereditary angioedema in the UAE presents clinically similar to cases in Europe and North America. Higher rates of consanguinity may contribute to larger affected families and genetic clustering. Delayed diagnosis remains a challenge, particularly in older generations of patients. Abdominal HAE attacks are frequently misdiagnosed as surgical emergencies. Educational initiatives and small-group training programs have significantly improved awareness among clinicians. Improved laboratory access to C4 and C1 inhibitor testing has facilitated earlier diagnosis. Regional consensus guidelines emphasize early diagnosis and universal access to on-demand therapy. Specialized allergy and immunology centers remain limited across the region. Chapters:00:00 Introduction to HAE in the UAE06:58 Challenges and Regional Differences in HAE09:52 Awareness and Education Efforts11:12 Regional Consensus on HAE Management14:05 Future Steps for HAE Care in the UAEDo 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
-
48
tPA-Induced Angioedema
In this episode of All Things Angioedema, Dr. Thomas Buttgereit speaks with Dr. Maria Bova, allergist and clinical immunologist from Naples, Italy, about a rare but potentially life-threatening form of angioedema: angioedema induced by thrombolytic therapy, particularly tissue plasminogen activator (tPA).They discuss:🔹 What is tPA-induced angioedema and how often does it occur in stroke patients? 🔹 Why is this condition frequently underrecognized in emergency and intensive care settings? 🔹 What clinical features distinguish it from histaminergic and hereditary angioedema? 🔹 Which pathophysiological mechanisms are likely involved, including bradykinin activation? 🔹 What new research findings suggest immune cell dysregulation in affected patients? 🔹 Which patient- and treatment-related risk factors may increase susceptibility? 🔹 How should clinicians approach diagnosis and acute management in the absence of clear guidelines? Dr. Bova shares novel insights from her group’s research, including evidence for activation of the kallikrein-kinin system and elevated cleaved high-molecular-weight kininogen during attacks. The discussion highlights the urgent need for greater awareness, interdisciplinary collaboration between neurologists and immunologists, and clearer treatment algorithms, especially given the limitations of standard antihistamine and corticosteroid therapy in this condition. The episode concludes with a look toward future thrombolytic agents and their potential role in reducing angioedema risk. Key Learnings from the Episode:tPA-induced angioedema is a rare but serious complication of thrombolytic therapy. Prevalence varies widely and is likely underestimated in emergency settings. Angioedema typically develops within two hours after tPA administration. Common sites include lips, tongue, face, eyelids, and upper airways. The condition occurs without urticaria or itching and may last up to 24 hours. Evidence suggests a predominantly bradykinin-mediated mechanism. Immune cell activation and kallikrein-kinin system dysregulation play a role. Standard treatments (antihistamines, corticosteroids, adrenaline) are often ineffective. Bradykinin-targeted therapies such as icatibant or C1 inhibitor may be beneficial. Awareness among neurologists significantly increases detection rates. Multidisciplinary collaboration is essential for early recognition and management. New thrombolytic agents may reduce angioedema risk, but data are still limited. Chapters:00:00 Introduction to Angioedema and TPA01:43 Meet Dr. Maria Bova: Expert Insights03:00 Prevalence and Recognition of TPA-Induced Angioedema04:58 Pathophysiology of TPA-Induced Angioedema08:55 Risk Factors for Angioedema in Stroke Patients11:53 Clinical Presentation and Symptoms13:12 Treatment Approaches for Angioedema16:00 Awareness and Multidisciplinary StrategiesDo 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
-
47
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
-
46
What Angioedema Reveals About CSU
In this episode of All Things Angioedema, Thomas Buttgereit speaks with Dr. Vesna Trajkova, dermatologist and researcher from Skopje, North Macedonia, about the clinical relevance of angioedema in chronic spontaneous urticaria (CSU) and what its presence reveals about disease severity and underlying mechanisms. They discuss:🔹 How common is angioedema in patients with CSU? 🔹 Is angioedema linked to more severe or longer-lasting disease? 🔹 What is the role of autoimmunity and autologous serum skin testing? 🔹 How should these findings influence everyday clinical practice? Dr. Trajkova presents data from her recent study showing that 70% of CSU patients experience angioedema, with the vast majority occurring in those with severe disease. The discussion highlights associations between angioedema, higher disease activity, longer disease duration, and autoimmune markers, emphasizing that angioedema should nobe viewed as a minor accompanying symptom. Together, they explore how recognizing angioedema as a clinically meaningful marker can improve risk stratification, monitoring, and treatment decisions in CSU. Key Learnings from the Episode:Angioedema is highly prevalent in CSU, affecting around 70% of patients the CSU population investigated in the study. The presence of angioedema is strongly associated with severe CSU, occurring in over 80% of severe cases. CSU patients with angioedema tend to have a longer disease duration, indicating a higher cumulative burden. Autoimmune markers and comorbid autoimmune diseases are more frequent in CSU patients with angioedema. Autologous serum skin test positivity shows a trend toward higher angioedema prevalence, supporting an autoimmune component. Angioedema does not merely coexist with CSU but acts as a marker of disease severity and complexity. Routine CSU assessment should actively include angioedema evaluation, not just wheals and itch. Recognizing angioedema can help guide earlier treatment escalation and closer follow-up in clinical practice. Chapters:00:00 Introduction to Angioedema and CSU02:30 Guest Introduction: Vesna Trejkova04:50 Research Rationale and Study Overview10:34 Key Findings on Angioedema in CSU13:15 Study Limitations and Future Directions15:32 Clinical Implications of Research FindingsDo 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
-
45
Rare but Real: Tackling Acquired C1 -Inhibitor Deficiency
In this episode, Dr. Thomas Buttgereit welcomes Mats de Lange, medical doctor and PhD candidate at Amsterdam UMC, to discuss one of the rarest and most challenging forms of angioedema – acquired angioedema (AAE) due to C1 inhibitor deficiency (AAE-C1INH). They discuss🔹 What causes AAE, and how does it differ from hereditary angioedema? 🔹 Why is treatment still off-label for most patients? 🔹 What did the Amsterdam investigator-initiated trial reveal about Deucrictibant, a new bradykinin B2 receptor antagonist? 🔹 How could this research pave the way for the first approved AAE therapy? Mats de Lange shares insights from his team’s investigator-initiated trial on the long-term use of Deucrictibant, showing remarkable results – three out of four patients remained attack-free for 20 months. The discussion also highlights the unique challenges of studying such an ultra-rare condition and the hope for future phase III trials. Join us as we explore how collaborative research and patient participation are advancing the field of bradykinin-mediated angioedema. Key Learnings from the Episode:Acquired angioedema (AAE) is an extremely rare disorder caused by C1 inhibitor deficiency. Patients often have underlying hematologic diseases, making trials complex. Deucrictibant showed strong efficacy and safety in an investigator-initiated trial. All participants became attack-free during treatment, without major adverse events. Off-label access remains a challenge – approved therapies are urgently needed. Future multi-center studies and regulatory approval could transform patient care. Chapters00:00 Introduction to Angioedema and Guest Introduction03:06 Understanding Acquired Angioedema due to C1 Inhibitor Deficiency06:05 Current Treatment Landscape and Challenges07:16 Investigator-Initiated Trials and Droycriptiband11:05 Trial Design and Patient Characteristics11:52 Promising Results from the Trial13:06 Key Learnings and Future Directions15:44 Next Steps in Research and Treatment ApprovalDo 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
-
44
Bradykinin or Mast Cells? Decoding ACE inhibitor-induced angioedema
In this episode, Dr. Thomas Buttgereit welcomes Dr. Alexis Bocquet from the French National Center for Angioedema in Grenoble to discuss one of the most challenging forms of drug-induced angioedema — ACE inhibitor–induced angioedema. They discuss🔹 Why are ACE inhibitors among the most prescribed cardiovascular drugs worldwide? 🔹 How can physicians distinguish bradykinin-mediated from mast-cell-mediated angioedema? 🔹 What are the key risk factors for developing ACE inhibitor–induced angioedema? 🔹 How can the new diagnostic core support clinicians in practice? Dr. Bocquet shares findings from a French multicenter study conducted in Grenoble and Réunion Island, where he and his colleagues identified four clinical criteria that accurately differentiate ACE inhibitor–induced angioedema from other forms. He also explains the score they developed — a five-point tool that predicts diagnosis with more than 90% accuracy — and offers practical advice on treatment, including when to use icatibant or C1 inhibitor concentrate in acute care. Join us for a scientifically rich and practical conversation on how to diagnose and manage one of the most life-threatening but underrecognized types of angioedema. Key Learnings from the Epesode:ACE inhibitors are widely used for heart failure, hypertension, and kidney protection but can rarely cause bradykinin-mediated angioedema. The pathophysiology involves inhibition of bradykinin degradation, leading to increased vascular permeability and swelling. Risk factors include age over 65, female sex, African or Afro-Caribbean ethnicity, concomitant use of NSAIDs, smoking, cardiovascular comorbidities, and genetic variants in bradykinin receptor B2 or aminopeptidase N. In a French bicenter study (Grenoble & Réunion Island, 2019–2022), 126 patients were evaluated for angioedema without hives; 49 were confirmed as ACE inhibitor–induced, and 44 as mast cell-mediated. The four diagnostic factors identified were: No relapse after discontinuation of ACE inhibitor Attack duration longer than 24 hours Hospitalization in intensive care Fewer than three previous angioedema attacks These factors formed the five-point score: 0–2 points → Likely mast cell angioedema 4–5 points → >90% probability of ACE inhibitor–induced angioedema Persistent angioedema after stopping ACE inhibitors usually indicates mast- cell-mediated angioedema or CSU, not ACE inhibitor–induced angioedema. Genetic testing may help rule out hereditary angioedema with normal C1 inhibitor. Tranexamic acid shows little benefit in ACE inhibitor–induced angioedema. Treatment recommendations: Icatibant is first-line off-label therapy with rapid efficacy. C1 inhibitor concentrate is an effective alternative. Both are off-label but justified in life-threatening upper-airway cases.The team plans a national prospective validation of the diagnostic Score for ACE inhibitor-induced anigoedema across France in 2025. Chapters:00:00 Introduction to ACE Inhibitor Induced Angioedema03:31 Understanding ACE Inhibitors and Their Benefits06:00 Pathophysiology and Risk Factors of Angioedema09:02 Research Insights from CRIAC and Study Design11:30 Clinical Features and Diagnosis of Angioedema14:01 Proposed Diagnostic Score for Angioedema16:40 Treatment Options for ACE Inhibitor Induced AngioedemaDo 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
-
43
When C1 Is Normal: Managing Rare Bradykinin-Mediated Angioedema
In this episode, Dr. Thomas Buttgereit welcomes Dr. Efrem Eren, immunologist and allergy specialist from the University of Southampton, to discuss practical approaches to diagnosing and treating patients with recurrent angioedema, especially those with normal C1 inhibitor values. They discuss:🔹 How can physicians distinguish histamine- vs. bradykinin-mediated angioedema? 🔹 Why do some patients develop angioedema years after starting ACE inhibitors? 🔹 How can icatibant be used not only as treatment but also as a diagnostic tool? 🔹 What options exist for long-term prophylaxis when standard therapies fail? Dr. Eren shares his clinical framework for approaching difficult cases, including the value of patient education, treatment trials with tranexamic acid or omalizumab, and the growing role of icatibant and kallikrein inhibitors. He also highlights a moving patient story that demonstrates the life-changing impact of correct diagnosis and targeted therapy. Join us for this insightful discussion on how to navigate diagnostic uncertainty, choose treatment strategies, and improve patient outcomes in rare forms of angioedema. Key Learnings from the Episode:Categorization is key: Angioedema can often be grouped into histamine-mediated, mast-cell–bradykinin–mediated, or bradykinin-mediated causes. Diagnostic limitations: Laboratory tools are scarce; bradykinin measurement is not routinely available. Diagnosis often relies on clinical features and treatment response. ACE inhibitor angioedema can appear years after therapy initiation, often requiring a “second hit” to trigger. Treatment trials help guide diagnosis: High-dose antihistamines → mast-cell mediated Steroid responsiveness → mast-cell involvement Omalizumab → effective in some mast-cell angioedema cases Icatibant → valuable for suspected bradykinin-mediated angioedema (also used diagnostically) Tranexamic acid can be effective for some patients with angioedema linked to mast cells. C1 inhibitor concentrate is ineffective in patients with normal C1 levels and function. Patient burden is high, including anxiety, frequent hospital admissions, and restrictions in daily life. Case story: A teenager with unexplained recurrent angioedema gained her independence and normal life back after diagnosis and treatment with icatibant and kallikrein inhibition. Prophylaxis: Kallikrein inhibitors like berotralstat can be used in select patients; responses are typically evaluated over at least 3 months. Objective evidence (photos, symptom scores) is essential for diagnosis and evaluating treatment response. Chapters:00:00 Introduction to Angioedema and Its Challenges02:48 Understanding Angioedema: Types and Diagnosis07:13 Treatment Approaches for Angioedema12:22 Patient Experiences and Impact of Angioedema15:35 Prophylactic Treatments and Future DirectionsDo 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
-
42
COVID-19 & Angioedema: Insights from Italy
In this episode, Thomas welcomes Dr. Riccardo Senter, allergist at the University Hospital of Padova and member of the ITACA Network, to discuss the impact of COVID-19 on patients with bradykinin-mediated angioedema — including both hereditary and acquired C1 inhibitor deficiency forms. They discuss:🔹 How did COVID-19 affect angioedema severity, hospitalization rates, and recovery? 🔹 What does new data from the pan-Italian ITACA registry reveal about patient outcomes? 🔹 How do hereditary and acquired angioedema differ in their response to coronavirus infection? 🔹 What role do patient registries and research networks play in supporting rare disease care? Dr. Senter presents survey data from 15 Italian centers, detailing age, sex, disease severity, and COVID-19 outcomes for 52 angioedema patients treated in early 2021. He explains the differences between hereditary and acquired forms, why registries like ITACA are crucial for building robust knowledge, and how collaboration supports better care for rare disease patients. Join us for an insightful discussion on the realities of COVID-19 in angioedema patients — and how international research efforts can drive advancements in diagnosis, management, and patient support. Key Learnings from the Episode:COVID-19 did not lead to increased mortality in angioedema patients; no deaths occurred in the surveyed group. 8% of hereditary angioedema patients had severe COVID-19 requiring hospitalization, but all recovered. Acquired angioedema patients, despite older age, did not experience severe COVID-19 or complications. The ITACA network enabled collecting robust data across many centers, highlighting the role of registries in rare disease research. The distinction between hereditary (genetic deficiency) and acquired (secondary to other diseases like lymphoma) C1 inhibitor deficiency is crucial for clinicians and patients. Collaborative networks and standardized registries improve care and understanding of rare angioedema forms during pandemics. Chapters 00:00 Introduction to Angioedema and COVID-19 03:35 Understanding HAE and Acquired Angioedema Do 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
-
41
HAE Prodromes: Early Warning Signs & Why They Matter
In this episode, Thomas welcomes Dr. Mar Guilarte, allergist at Hospital Universitari Vall d’Hebron in Barcelona, to explore an often overlooked topic in HAE care: prodromal signs — the early symptoms that may signal an HAE attack. They discuss:🔹 What are prodromal signs, and how common are they in HAE patients? 🔹 Do patients treat their attacks differently based on these signs? 🔹 How do UK and Spanish patients compare in their treatment decisions? 🔹 Could biomarkers help us distinguish true HAE prodromes? Dr. Guilarte shares findings from her recent research, conducted with HAE patient groups in the UK and Spain, and discusses how early treatment can shorten attack duration and severity. She also explains how signs like erythema marginatum, abdominal discomfort, irritability, and fatigue vary across patients — and why clear definitions, education, and better diagnostic tools are urgently needed. Join us for a thought-provoking discussion on the complexity of HAE prodromes — and how understanding them better can help optimize treatment and outcomes. Key Learnings from the Episode:Prodromes are early signs or symptoms that precede HAE attacks — up to 60–80% of patients report them. Common prodromal symptoms include erythema marginatum, bloating, nausea, abdominal discomfort, irritability, and fatigue. Each patient tends to have consistent prodromes, which can help predict attacks, though subjective symptoms vary widely. Spanish patients tend to treat later than UK patients, possibly due to less specialist guidance or medication access. Treating attacks early reduces duration and severity, but definitions of “early” vary — especially with injectable medications. Oral on-demand therapies may encourage earlier intervention, as they’re easier to carry and administer. Not all prodromes lead to attacks, and the severity of a prodrome does not always predict the severity of the attack. There is a need for biomarkers to help determine whether a prodrome will be followed by an actual HAE attack. Erythema marginatum is the only objective prodrome, but can be confused with urticaria, leading to misdiagnosis. Education of both patients and physicians is critical to recognizing and acting on prodromal signs. Chapters 00:00 Introduction to Angioedema and Prodromal Signs03:13 Understanding Prodromal Signs in HAE04:04 Research Findings on Prodromal Signs05:37 Common Prodromal Signs Reported by Patients07:11 Comparative Analysis of Patient Responses08:43 The Importance of Early Treatment09:00 Challenges in Defining Early Treatment11:23 Unanswered Questions in Prodromal Research13:25 Differentiating Erythema Marginatum and AngioedemaDo 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
-
40
HAE in Mexico: Challenges, Progress & Hope
In this episode, host Thomas Buttgereit speaks with Dr. Francisco Contreras, pediatric allergist and head of the Angioedema Clinic at the National Institute of Pediatrics in Mexico City, about the current challenges and progress in treating hereditary angioedema (HAE) in Mexico. They discuss:🔹 Why is HAE still underdiagnosed in Mexico? 🔹 What testing and treatments are currently available? 🔹 How is access influenced by Mexico’s divided healthcare system? 🔹 What can help improve HAE care for children and rural patients? Dr. Contreras shares his frontline experience treating pediatric patients with HAE and outlines the systemic barriers — from limited awareness among physicians to inconsistent access to diagnostic testing and long-term therapies. He also discusses how national registries, physician training, and patient advocacy are shaping the future of HAE care across Mexico. Join us for an honest, informative conversation about improving rare disease care in resource-diverse settings. Key Learnings from the Episode:HAE is significantly underdiagnosed in Mexico, with only 14–21% of estimated pediatric cases identified. Lack of awareness among general physicians is a major barrier — even though lab tests (C4, C1 inhibitor) are available in urban centers. Specialized testing is often limited to private or large public hospitals, delaying diagnosis for rural and underserved patients. Pharmaceutical industry partnerships help provide diagnostic support and access to genetic testing. Available treatments include: C1 inhibitor (plasma-derived) for on-demand and prophylaxis Icatibant for acute attacks Limited access to newer therapies, especially for long-term prophylaxis Mexico’s fragmented healthcare system affects treatment availability — with different access across social security, military, private, and public services. Off-label treatment is required for pediatric HAE patients with normal C1 inhibitor and confirmed mutations. Childhood obesity complicates dosing, as adult doses are sometimes needed in children with higher body weight. Patient advocacy organizations are playing a growing role in awareness and support. Registries and awareness campaigns are underway to improve diagnosis and physician education. Dr. Contreras and colleagues aim to establish the first ACARE center in Mexico, boosting access and research. Early diagnosis and collaborative care are essential to improving patient outcomes and quality of life. Chapters 00:00 Introduction to HAE and Guest Background 03:17 Current Situation of HAE in Mexico 05:35 Challenges in Diagnosis and Treatment 08:02 Available Treatments for HAE 09:47 Access and Prescription Challenges 12:28 Patient Advocacy and Future Improvements 14:10 Final Thoughts and Collaboration Do 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
-
39
Cholinergic Urticaria & Angioedema: What You Need to Know
In this episode, Thomas welcomes Dr. Sabine Altrichter, urticaria expert and physician at Kepler University Hospital in Linz, Austria, to discuss a fascinating and underrecognized condition: cholinergic urticaria — especially in patients who also experience angioedema.They discuss:🔹 What makes cholinergic urticaria different from other urticaria types? 🔹 Why do some patients develop angioedema in addition to wheals?🔹 How can we distinguish between cholinergic urticaria and exercise-induced anaphylaxis?🔹 What are current and emerging treatment options? Dr. Altrichter shares insights from clinical research and experience, including findings that show nearly half of cholinergic urticaria patients may develop angioedema.She explains the two main subtypes — allergy-related and sweat gland-related — and what this means for diagnosis and treatment. The discussion also covers new treatment options like anti-IgE therapies, mast cell-depleting agents, and drugs in the clinical pipeline like remibrutinib. Join us for a practical and engaging conversation on how to better diagnose and manage this unique condition.Key Learnings from the Episode:Cholinergic urticaria is triggered by body heating (e.g., exercise, sauna, passive warmth), leading to small, itchy wheals. Nearly 50% of patients also experience angioedema, often around the eyes or lips, indicating more severe disease.Patients with angioedema tend to have longer-lasting and more intense symptoms than those without. Two subtypes are emerging: one IgE/allergy-related and another with sweat gland dysfunction. Angioedema in cholinergic urticaria is not typically life-threatening, but may be accompanied by mild systemic symptoms. Provocation testing (e.g., exercise or stair running) helps confirm diagnosis. Antihistamines are first-line, but often insufficient in patients with angioedema. Omalizumab (anti-IgE) is effective in about two-thirds of patients. Mast cell-depleting therapies and remibrutinib are promising treatments in development. Differentiating from exercise-induced anaphylaxis is key: the latter causes more unpredictable and systemic reactions.Ongoing trials may reshape how we treat both mild and severe forms of the disease. Chapters 00:00 Introduction to Chronic Inducible Urticaria 03:03 Understanding Cholinergic Urticaria 04:57 Angioedema and Its Connection to Cholinergic Urticaria 07:23 Subtypes of Cholinergic Urticaria 08:17 Mechanisms Behind Cholinergic Urticaria 09:56 Diagnosis of Cholinergic Urticaria 11:17 Treatment Options for Cholinergic Urticaria 13:10 Differentiating from Exercise-Induced Anaphylaxis 14:34 Future Treatments and Research 16:41 Mast Cell Depletion and Its Implications Do 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
-
38
AI & Data Science in Angioedema Research
In this episode, Thomas welcomes Felix Aulenbacher, a bioinformatician and statistician from ACARE Berlin, to discuss the role of data science, machine learning, and artificial intelligence (AI) in angioedema research. They discuss:🔹 How does data analysis help classify different types of angioedema? 🔹 What role do AI and machine learning play in identifying disease patterns? 🔹 How does the "10 Questions" tool assist in diagnosing angioedema? 🔹 How is AI revolutionizing medical research, and what are its limitations? Felix shares insights on the intersection of bioinformatics and medicine, the challenges of medical data analysis, and how AI is transforming the field of angioedema research. Key Learnings from the Episode Bioinformatics plays a crucial role in medical research, analyzing large datasets to uncover hidden patterns in diseases. Data standardization is essential—poorly formatted data can make analysis difficult and lead to incorrect conclusions. Machine learning models like Random Forest help classify different types of angioedema based on patient questionnaires. The "10 Questions" tool has been developed to quickly differentiate different types of angioedema including HAE, mast cell-mediated angioedema, and drug-induced angioedema. AI can enhance data analysis, but it requires careful validation—incorrect use can lead to misinformation. ChatGPT and AI tools assist with coding and data analysis, but human oversight is still essential. AIDUOS, a ChatGPT-based tool, has been developed for urticaria research, relying on verified medical publications. AI is not a threat to data analysts, but professionals must adapt to its evolving capabilities. Chapters 00:00 Introduction to Angioedema and Bioinformatics 02:20 Felix's Journey into Bioinformatics 04:26 The Role of Data Management in Medical Research 06:54 Statistical Methods and Their Applications 09:21 Machine Learning in Angioedema Research 11:43 The Impact of AI on Data Analysis 14:05 Future of Data Management and AI in Medicine Do 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
-
37
Mortality in HAE: The Silent Threat
In this episode, Thomas welcomes Dr. Fernanda Minafra, allergist and immunologist at the Federal University of Minas Gerais, Brazil, to discuss one of the most concerning aspects of hereditary angioedema (HAE): mortality. They discuss:🔹 How often do HAE-related deaths occur? 🔹 Why is undiagnosed HAE a major risk factor? 🔹 What do global studies say about mortality rates? 🔹 What can be done to reduce HAE deaths worldwide? Dr. Minafra shares insights from her research, including a systematic review on HAE-related deaths and a study on mortality rates in Brazil. She highlights the urgent need for better diagnosis, access to treatment, and public health policies to prevent avoidable deaths. Join us for this crucial discussion on why early diagnosis and proper treatment are key to saving lives. Key Learnings from the Episode HAE-related deaths are often caused by asphyxiation due to laryngeal angioedema. HAE mortality rates remain high in many parts of the world, especially in developing countries. A systematic review found that 1 in 20 HAE patients has died from asphyxia. Undiagnosed patients are at much higher risk of fatal outcomes. Many death certificates fail to properly identify HAE as the cause of death. HAE patients who die from asphyxiation typically lose 20 years of life expectancy. Access to diagnostic tests and effective treatments is essential for preventing deaths. Global collaboration through ACARE centers is needed to improve mortality data collection and patient outcomes. Chapters 00:00 Introduction to Angioedema and Mortality 03:13 Understanding Hereditary Angioedema (HAE) and Its Risks 05:34 Research Insights on Mortality in HAE 08:21 Findings from Brazil: A Closer Look at HAE Deaths 10:47 The Impact of Diagnosis and Treatment on HAE Mortality 13:41 Current Status and Future Directions in HAE Research Do 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
-
36
Dried Blood Spot: A Game Changer for HAE Diagnosis
In this episode, Thomas welcomes Dr. Jane Wong from Queen Mary Hospital, Hong Kong, to discuss a groundbreaking method for diagnosing hereditary angioedema (HAE) in regions with limited laboratory access. Traditional tests like complement C4, C1 inhibitor levels and C1 inhibitor function are crucial but not widely available in many parts of the world, delaying diagnosis and treatment.They discuss:🔹 What is dried blood spot (DBS) testing? 🔹 How does DBS compare to conventional lab tests? 🔹 Can DBS be used for large-scale screening and family testing? 🔹 What are the limitations and future applications of DBS? Join us for an in-depth discussion on how this simple, cost-effective method can revolutionize HAE diagnosis and patient care worldwide. Key Learnings from the Episode:Traditional HAE testing (C4, C1 inhibitor levels and function) is limited in many regions, delaying diagnosis and treatment. Dried blood spot (DBS) testing offers a reliable, cost-effective alternative, requiring only a few drops of blood. DBS showed strong correlation with conventional lab results, making it a promising screening tool. DBS allows for easy at-home or community-based sample collection, overcoming logistical barriers. DBS can be used for family screening, identifying undiagnosed relatives in high-risk groups. The method is stable and easy to transport, requiring minimal laboratory infrastructure. More extensive studies are needed to validate DBS for broader population screening. Future applications may include genetic testing for HAE with normal C1 inhibitor cases. Chapters 00:00 Introduction to HAE and Diagnostic Challenges 03:12 Conventional Testing Methods for HAE 05:44 Exploring Alternative Diagnostic Methods 08:25 Validation of the Dried Blood Spot Method 10:40 Family Screening and Community Engagement 13:29 Limitations and Future Directions 16:07 The Future of HAE Diagnostics in Asia-Pacific Do 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
-
35
Unraveling Angioedema: The Complexity of HAE and Unknown Variants in Canada
In this episode, Dr. Thomas Buttgereit speaks with Dr. Adil Adatia about the latest findings on hereditary angioedema (HAE) in Canada, focusing on the challenges in diagnosing and treating patients with normal C1 inhibitor levels. They explore the differences between well-known genetic variants, discuss the average diagnostic delay of over 10 years, and examine treatment approaches, including long-term prophylaxis and the role of estrogen as a trigger. Additionally, they highlight the need for standardized guidelines in diagnosing and managing this condition to better treatment response.Key Learnings from the EpisodeThe average diagnostic delay for hereditary angioedema with normal C1 inhibitor levels exceeds 10 years in Canada.Patients with normal C1 inhibitor function often experience different triggers, with estrogen and stress being more prominent compared to other angioedema variants. A significant heterogeneous group of patients exists, where genetic mutations have yet to be identified.Many patients require multiple long-term prophylaxis treatments, indicating a more severe disease course.Genetic testing has historically been limited, but recent efforts are increasing its role in diagnosis.The lack of standardized diagnostic criteria across Canada makes it difficult to classify and treat patients uniformly.Insurance coverage for treatments like omalizumab varies by province and county, making access to care inconsistent.There is a need for clear definitions of treatment trials and treatment failures to improve clinical decision-making.Chapters 00:00 Introduction to HAE and the Guest 02:27 Understanding HAE with Normal C1 Inhibitor 05:30 Diagnostic Challenges and Delays 08:21 Comparative Analysis of HAE Types 11:32 Limitations of Current Research 14:34 Treatment Responses and Variability 17:16 Conclusion and Future Directions Do 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
-
34
Episode 33 – Comorbidities in people with HAE
What comorbidities are seen in people with HAE? Dr Linda Sundler Björkman joins Dr Thomas Buttgereit to discuss her research on comorbidities in HAE, including methodology, key findings, and the need for further research.Disclosure statement: Unrestricted research grant from CSL Behring. Honorars from Takeda, Biocryst and CSL Behring.Do 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
-
33
Episode 32 – NSAID hypersensitivity
How do we identify people with non-steroidal anti-inflammatory drug (NSAID)-induced angioedema? Dr Thomas Buttgereit welcomes Dr Stefan Cimbollek to discuss NSAID hypersensitivity in people with angioedema, including clinical manifestations and management strategies. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: An algorithm for the diagnosis and treatment of nonsteroidal anti-inflammatory drugs hypersensitivity, 2024 update; Approaches to the diagnosis and management of patients with a history of nonsteroidal anti-inflammatory drug-related urticaria and angioedema.
-
32
Episode 31 – Patient caregiver burden in HAE
What is the emotional, physical, and economical impact of HAE on patient caregivers? Dr Ricardo Zwiener joins Dr Thomas Buttgereit to discuss the significant burden on the “invisible second patients” (caregivers) in HAE and share expert advice on how to extend support to caregivers. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/.
-
31
Episode 30 – Towards complete control in HAE
How effective are current management approaches for HAE in controlling the disease? HAE patient and physician Kathrin Schön offers her perspective as she joins Dr Thomas Buttgereit to discuss insights from a quality-of-life survey assessing the emotional, physical, and social impact of living with HAE. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/.
-
30
Episode 29 – Global Angioedema Forum 2024
The Global Angioedema Forum 2024 presented an opportunity to bring together medical specialists, patients, and caregivers from around the world to share their experiences of the management and diagnosis of angioedema. Dr Thomas Buttgereit considers the most poignant discussion points from the event, while Dr Dharmagat Bhattarai summarises some of the challenges he faces working in a clinical setting with limited resources. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/.
-
29
Episode 28 – Emerging treatment options for long-term prophylaxis in HAE
What are the available treatment options for long-term prophylaxis in HAE, and why are more options being investigated? Dr Thomas Buttgereit discusses the latest treatment advances, including mechanism of action, efficacy and safety, with guest Professor Timothy Craig. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: C1 inhibitor review; open label extension of APeX-2 study; VANGUARD phase 3 study; HELP OLE study; OASIS-HAE study; CRISPR in HAE.
-
28
Episode 27 – Emergency room care: A rapid HAE triage tool
How can emergency physicians quickly recognise HAE in patients who present with acute angioedema? Dr Thomas Buttgereit explores a new “easy-to-apply” triage tool with guest Dr Stephen Betschel, who, with his team in Toronto, developed this tool to enable rapid identification of HAE and appropriate intervention in the emergency room setting. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Development of the hereditary angioedema rapid triage tool; Could it be hereditary angioedema?—Perspectives from different medical specialties.
-
27
Episode 26 – HAE and plasminogen mutation
What are the clinical signs, symptoms, and pathomechanisms of HAE caused by a plasminogen mutation, a recently identified cause of HAE with normal C1 inhibitor activity? Dr Thomas Buttgereit and Dr Andreas Recke discuss this rare type of recurrent HAE, which can manifest for the first time in older adults, and note how “this is atypical for a genetic disease – normally, genetic diseases are hard-wired”. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Identification of the recently described plasminogen gene mutation p.Lys330Glu in a family from Northern Germany with hereditary angioedema; Screening for plasminogen mutations in hereditary angioedema patients; and Treatment of patients with hereditary angioedema with the c.988A>G (p.Lys330Glu) variant in the plasminogen gene.
-
26
Episode 25 – Acute treatment of HAE attacks
Professor Marc Riedl, Dr Danny Cohn, and host Dr Thomas Buttgereit consider why "there are quite a few patients who delay their on-demand treatment”, and discuss orally active agents under investigation that may help to overcome the barriers to timely treatment. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: The international WAO/EAACI guideline for the management of hereditary angioedema; US HAEA medical advisory board 2020 guidelines for the management of hereditary angioedema; and Delayed on-demand treatment of hereditary angioedema attacks: Patient perceptions and associated barriers.
-
25
Episode 24 – Genetic testing in HAE: Behind the scenes
When is genetic testing required in the diagnostic workup of recurrent angioedema? Dr Thomas Buttgereit talks genetic tests for HAE with Professor Roger Colobran Oriol, covering the types of samples that can be used, current technologies, and how results are interpreted. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Genetics in the management of HAE; C1 inhibitor mutations in HAE; and the expanding spectrum of mutations in HAE .
-
24
Episode 23 – A patient’s perspective on living with HAE
“The pain was unbearable.” Hear about Antonia’s experience of being diagnosed with HAE, the burden of symptoms and attacks, the unexpected silver linings, and why trust and safety are an important aspect of healthcare for people with HAE. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: World Allergy Organization Journal, British Society for Immunology, and European Medical Journal.
-
23
Episode 22 – HAE International
Dr Thomas Buttgereit welcomes Henrik Balle Boysen, President of HAI International (HAEi), to discuss the HAEi network, including its origins, initiatives and tools developed to support people with HAE. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: HAE International; HAE day; and ACARE.
-
22
Episode 21 – Angioedema: A South African perspective
Associate Professor Jonny Peter joins Dr Thomas Buttgereit to discuss angioedema in South Africa, including the burden of disease for patients, the importance of patient education, and the success of advocacy for access to targeted treatments. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: South African Virtual Angioedema Centre; University of Cape Town Lung Institute, Allergy and Immunology Unit; and Fresh frozen plasma for on-demand hereditary angioedema treatment in South Africa and Iran.
-
21
Episode 20 – EAACI 2024 reflections
Dr Thomas Buttgereit asks Dr Clemens Schöffl about EAACI Congress 2024 highlights, which include early data on outcomes of CRISPR-based gene editing of KLKB1 in people with HAE. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: EAACI Congress 2024 – Breakthroughs in management of hereditary angioedema; CRISPR-Cas9 in vivo gene editing of KLKB1 for hereditary angioedema; Clinical experience with berotralstat in patients with hereditary angioedema with normal C1-esterase inhibitor: A commented case series.
-
20
Episode 19 – Pregnancy in HAE
Dr Thomas Buttgereit welcomes Dr Teresa Caballero to discuss HAE in pregnant women, including the possible reasons for increased attacks and recommended treatment options. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: How does pregnancy and type of delivery affect the clinical course of hereditary angioedema?; and Successful pregnancy outcome in a hereditary angioedema patient with previous pregnancy losses: A proposed delivery plan.
-
19
Episode 18 – Factor XII mutation in HAE
Professor Anete Grumach joins Dr Thomas Buttgereit to discuss factor XII mutation in people with HAE, including the reasons for the high prevalence in females and recommended genetic tests. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Homozygosity for a factor XII mutation in one female and one male patient with hereditary angio-oedema; CpaA is a glycan-specific adamalysin-like protease secreted by Acinetobacter baumannii that inactivates coagulation factor XII; and Angioedema with normal complement studies: What do we know?
-
18
Episode 17 – Unmet needs for HAE in Asia
Dr Thomas Buttgereit welcomes Dr Philip Li to discuss the unmet needs of people with HAE in Asia, including the lack of consensus guidelines for the management of HAE, the lack of suitable diagnostic tools, and limited access to treatment. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Epidemiology, management and treatment access of hereditary angioedema in the Asia pacific region; Screening for type II hereditary angioedema; and Hong Kong-Macau severe hives and angioedema referral pathway.
-
17
Episode 16 – ACE inhibitor-induced angioedema
Ear, nose and throat specialist Dr Robin Lochbaum joins Dr Thomas Buttgereit to discuss angiotensin-converting enzyme (ACE) inhibitor‑induced angioedema, including information on the incidence and mechanism of action, and antihypertensive treatment options. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Concomitant medication in patients with bradykinin-mediated angioedema – there’s more than ACE inhibitors; The role of angiotensin receptor blockers in patients with angiotensin-converting enzyme inhibitor-induced angioedema; and Angiotensin II receptor blockers are safe in patients with prior angioedema related to angiotensin-converting enzyme inhibitors – a nationwide registry-based cohort study.
-
16
Episode 15 – Mast cell-mediated angioedema
“Should it be considered a part of chronic spontaneous urticaria?” Dr Thomas Buttgereit welcomes Dr Marta Ferrer Puga to talk about mast cell-mediated angioedema, including discussion of the international urticaria guidelines definition. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: A comparative study of sex distribution, autoimmunity, blood, and inflammatory parameters in chronic spontaneous urticaria with angioedema and chronic histaminergic angioedema; Angioedema severity and impact on quality of life: Chronic histaminergic angioedema versus chronic spontaneous urticaria; and Medical algorithm: Diagnosis and management of histaminergic angioedema.
-
15
Episode 14 - Collaboration in HAE
“There are a lot of doctors that should know about angioedema.” Ear, nose and throat specialist Dr Janina Hahn joins Dr Thomas Buttgereit to discuss the importance of implementing an interdisciplinary approach in HAE, including tips on overcoming challenges. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/.
-
14
Episode 13 – Angioedema in the paediatric population
“Children should be informed about their illness according to their age.” Professor Henriette Farkas joins Dr Thomas Buttgereit to discuss angioedema in children, covering acute treatment options and the differing symptoms between adults and children. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Results from the phase 3 SPRING study; International consensus on the diagnosis and management of pediatric patients with hereditary angioedema with C1 inhibitor deficiency; and Diagnosing pediatric patients with hereditary C1-inhibitor deficiency.
-
13
Episode 12 – The HAE specialist: ‘Never give up’
“I want to take an extra step, just to make sure that we never give up and provide them with the care that they deserve to receive.” Dr Danny Cohn joins Dr Thomas Buttgereit to talk about the role of an HAE specialist providing long-term, often multigenerational care, including the benefits offered by ACARE centres. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: The Chronic Urticaria Registry (CURE).
-
12
Episode 11 – The perspective from India in treating paediatric patients
Dr Thomas Buttgereit is joined by Professor Ankur Kumar Jindal to discuss his experience as a paediatrician treating angioedema in India, covering the reoccurring challenges and how best to counsel families when discussing the risk of transmission to the next generation. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: P-49 Transmission patterns in C1-INH deficiency Hereditary Angioedema favours a wild-type male offspring: our experience at Chandigarh, India; Management of hereditary angioedema in resource-constrained settings: A consensus statement from Indian subcontinent; Screening for type II hereditary angioedema; Transmission patterns of C1-INH deficiency hereditary angioedema favours a wild-type male offspring and Epidemiology, management and treatment access of hereditary angioedema in the Asia pacific region.
-
11
Episode 10 – Who is behind the scenes of ACARE?
Dr Thomas Buttgereit is joined by Julia Föll and Reinhardt Britz to discuss the responsibilities of working within an ACARE office, covering audit criteria and ongoing ACARE projects. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Become an ACARE, ACARE LevelUp: The ACARE physician information and education platform and Programme for the identification of mutations in genes of patients with recurrent idiopathic or hereditary angioedema.
-
10
Episode 9 – The AURORA study
“In the past, they’ve used 72 different combinations of outcomes and outcome measures.” Remy Peterson joins Dr Thomas Buttgereit to discuss the need for the AURORA study, and shares the resulting consensus for acute treatment outcomes in HAE. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: The registered study protocol: AcUte tReatment Outcomes in heReditary Angioedema (AURORA) and Outcome measures in randomized controlled studies of acute therapy for hereditary angioedema: A systematic review.
-
9
Episode 8 – The future of angioedema: Is there a cure on the horizon?
Join Dr Lauré Fijen and Dr Thomas Buttgereit as they discuss emerging angioedema treatments, covering efficacy, safety, frequency and route of administration. The experts also reflect on the possibility of a cure for HAE. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Hereditary angioedema: The clinical picture of excessive contact activation and Current and prospective targets of pharmacologic treatment of hereditary angioedema types 1 and 2.
-
8
Episode 7 – Treating hereditary angioedema
Join Professor Anna Valerieva and Dr Thomas Buttgereit as they discuss the burden of living with rare forms of angioedema, particularly HAE. Drawing from her expertise as an allergologist at the Medical University of Sofia, Bulgaria, Professor Valerieva emphasises the importance of viewing patients holistically and considering their preferences. The experts also review how the introduction of new treatments has changed patients’ lives and minimised recurrent angioedema attacks. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Mitigating disparity in healthcare resources between countries for management of hereditary angioedema and Therapeutic management of hereditary angioedema: past, present, and future.
-
7
Episode 6 – Tackling acquired angioedema and related comorbidities
Join Dr Andrea Zanichelli and Dr Thomas Buttgereit as they discuss complex angioedema cases, including acquired angioedema diagnosed in later life. Drawing from his perspective as Head of the Angioedema Center in Milan, Italy, Dr Zanichelli explores how C1 and C4 inhibitor deficiencies may indicate a possible acquired angioedema diagnosis, common comorbidities due to this condition, and the current treatment options available. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Diagnosis, course, and management of angioedema in patients with acquired C1-inhibitor deficiency, A nationwide study of acquired C1-inhibitor deficiency in France: characteristics and treatment responses in 92 patients, Icatibant treatment for acquired C1-inhibitor deficiency: a real-world observational study, Acquired C1-inhibitor deficiency and lymphoproliferative disorders: a tight relationship and Splenic marginal zone lymphomas in acquired C1-inhibitor deficiency: clinical and molecular characterization.
-
6
Episode 5 – An ENT view of angioedema
Join Dr Antonia Scherer and Dr Thomas Buttgereit as they discuss the impact of recurrent hereditary angioedema on the larynx. Drawing from her perspective as an ENT expert, Dr Scherer explores how laryngeal angioedema is assessed in the clinic, and the current treatment options available. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: The international WAO/EAACI guideline for the management of hereditary angioedema—The 2021 revision and update and Efficacy of Different Medical Therapies for the Treatment of Acute Laryngeal Attacks of Hereditary Angioedema due to C1-esterase Inhibitor Deficiency
-
5
Episode 4 – Androgens in hereditary angioedema
Dr Thomas Buttgereit is joined by Dr Carolina Vera to discuss the use of attenuated androgens in the treatment of hereditary angioedema and their associated risks and side effects. Both exerts delve into the safety, ethical considerations and alternative treatment options to using androgens for the treatment of hereditary angioedema. Dr Vera concludes the discussion with an in-depth explanation of the SHAERPA project, focusing on the discontinuation of androgen use in individuals with angioedema, and the benefits this project can have in providing guidance on alternative medications. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: The international WAO/EAACI guideline for the management of hereditary angioedema—The 2021 revision and update, Attenuated androgen discontinuation in patients with hereditary angioedema: a commented case series and and WAO Guideline for the Management of Hereditary Angioedema.
-
4
Episode 3 – Angioedema and EAACI 2023
Professor Jason Fok joins Dr Thomas Buttgereit to discuss angioedema updates from the European Academy of Allergy and Clinical Immunology (EAACI) Congress 2023 and the role EAACI has in disseminating novel insights in angioedema treatment and diagnosis. Dr Buttgereit takes a deep dive into how data presented at EAACI congresses can be implemented into specialist ACARE clinics and the benefits the congress has in aiding clinicians to implement the latest guidelines for the benefit of patients. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Biomarkers in hereditary angioedema, Managing diagnosis, treatment, and burden of disease in hereditary angioedema patients with normal C1-esterase inhibitor, The expanding spectrum of mutations in hereditary angioedema, and Recurrent angioedema: Diagnosing the rare and the frequent.
-
3
Episode 2 – What is angioedema and what is not?
Dr Thomas Buttgereit is joined by Professor Markus Magerl, leader of the angioedema clinics at ACARE Berlin. Their conversation explores the clinical features of recurrent angioedema and the essential differential diagnoses that dermatologists must bear in mind when encountering facial swellings. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Classification, diagnosis, and approach to treatment for angioedema: consensus report from the Hereditary Angioedema International Working Group.
-
2
Episode 1 – What “angioedemologists” do and what motivates them
Dr Thomas Buttgereit welcomes the renowned urticaria specialist, Professor Marcus Maurer. Professor Maurer is the founding force behind both ACARE and UCARE, and spearheads the popular podcast, All Things Urticaria. The pair delve into the significance of angioedema across all areas of medicine and offer insights into the role and responsibilities of angioedemologists. They also shed light on the complexities of tackling angioedema, highlighting the invaluable role of the ACARE global network in tackling these challenges. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Definition, aims, and implementation of GA2LEN/HAEi Angioedema Centers of Reference and Excellence.
We're indexing this podcast's transcripts for the first time — this can take a minute or two. We'll show results as soon as they're ready.
No matches for "" in this podcast's transcripts.
No topics indexed yet for this podcast.
Loading reviews...
ABOUT THIS SHOW
Started by ACARE in 2023 within the ACARELevelUp program this podcast is an invaluable resource for health care professionals, and anyone interested in learning more about angioedema. Dr. Thomas Buttgereit, Head of the Study Center at Charité Berlin, discusses all forms of angioedema, their pathophysiology, burden and treatment strategies with experts from all over the world. All opinions expressed are those of the faculty. This content should not be taken as medical advice and is for informational purposes only. Learn more about ACARE here: https://acare-network.com/
HOSTED BY
ACARE, the Global Allergy and Asthma Excellence Network for Angioedema
CATEGORIES
Loading similar podcasts...