From Alejandra Menendez, HAE Argentina

The Argentina Experience at the 2026 Global Angioedema Leadership Conference 

From March 26th to 29th a team from AEH Argentina was proud to participate in the 2026 Global Angioedema Leadership Conference, a joint event organized by HAEi and ACARE held in Madrid, Spain.

Bringing together patient advocates, healthcare professionals, and industry representatives, the conference offered a unique platform to learn, exchange information, and together discuss the future of the HAE road ahead.

For AEH Argentina, this global meeting was a valuable opportunity to strengthen international collaboration, gain insight into emerging therapeutic developments, and reflect on the persistent challenges that continue to impact people living with HAE across different regions. We also had the chance to connect with patients’ leaders from all over the globe who work tirelessly to make a difference for people living with HAE in their respective regions.

Argentina’s Contributions

During the conference, Argentina actively contributed to the scientific and patient advocacy dialogue through participation in dedicated sessions.

AEH Argentina was part of the “HAEi member organization Growth & Impact Summit” Spotlight, where representatives from Argentina, Chile, and Colombia shared their insight and reflections on the outcomes of the LATAM Growth and Impact Summit held in Sao Paolo, Brazil, in May 2025. This exchange provided an opportunity to evaluate progress achieved, identify remaining gaps, and reinforce the importance of sustained regional collaboration.

In addition, Argentina participated in the session “Real lives, real challenges: What makes a difference?” where speakers from Argentina, Brazil, and North Macedonia explored the emotional and psychological burden of living with HAE and discussed practical strategies to strengthen resilience and improve quality of life. It is worth pointing out that this marked the first time that mental health – such a critical and often overlooked aspect of the disease – was formally addressed within a global conference program.

We also had the pleasure to participate in the “Member Organization’s Collaboration forum for South America and Mexico”, a fun and joyful chance for leaders of the organizations in this region of the world to get to know each other and recognize the need to strengthen a unified regional voice. This space provided a wonderful opportunity not only to connect with fellow patient leaders but also to share realities from each country and reflect on both the progress and the significant challenges that remain.

Scientific Contribution: Poster Presentation

We were also proud to present our poster, “Closing the Gap Between Innovation and Access: Real-World Evidence from a National AEH Argentina Online Survey.”

This work provided critical insights into the current landscape of hereditary angioedema (HAE) in Argentina, including the use of long-term prophylaxis, access to on-demand treatments, and the persistent barriers patients face in obtaining appropriate care. Our findings highlighted that, despite remarkable scientific advances in HAE and the growing availability of effective therapies, substantial gaps persist in equitable and timely access to treatment, with many patients still facing prolonged bureaucratic and administrative hurdles. In particular, the frequent need for judicial intervention underscores the extent of the difficulties patients encounter when trying to secure essential HAE therapies. These results reinforce a clear reality: while innovation in treatment continues to progress, real-world access has not kept pace. Bridging this gap is essential. Reducing systemic barriers will be critical to ensure that all people living with HAE in our country can fully benefit from current and future therapeutic advances.

On the scientific track, one of our HAE specialists from Argentina, Dr. Ricardo Zwiener, participated in the session called “The Patient Journey”, where specialists from different countries across the globe shared their experiences in monitoring and supporting patients with hereditary angioedema throughout every stage of their lives—from birth and childhood, to pregnancy, menopause, and in other special circumstances. The discussion followed the life of a female patient, highlighting how clinical decisions and care strategies must evolve over time to address changing needs and disease patterns.

In conclusion, participating in the 2026 Global Angioedema Leadership Conference represented a meaningful opportunity for AEH Argentina to strengthen its engagement within the global HAE community, contribute to regional and international dialogue, and reaffirm its commitment to advancing equitable access to diagnosis and treatment. While important progress has been achieved, the conference also highlighted the significant work that remains ahead. Continued collaboration—both regionally and globally—will be critical to reducing disparities and ensuring that all patients, regardless of where they live, can access the care they need.

AEH Argentina remains committed to this shared mission.