Make a Difference: The 2026 Global Angioedema Leadership Conference

Eight hundred HAE change-makers were warmly welcomed to Madrid for the start of the 2026 Global Angioedema Leadership Conference, organized by HAEi and ACARE.

Anthony Castaldo, HAEi CEO and Chairman of the Board, and Henrik Balle Boysen, HAEi President, were joined virtually by Professor Markus Magerl. The bringing together of advocacy and healthcare professional leaders signaled the scope and ambition of the meeting.

Tony told the audience, “This is more than just a conference. It’s a powerful expression of what is possible when patients, physicians, scientists, and the pharmaceutical industry work side by side to improve lives.”

Henrik echoed these sentiments in his welcome: “We are delighted to see such an extraordinary gathering here in Spain. To have 800 people gathered from all over the world, even in a time of geopolitical turbulence, sends a clear message.”

‘Our HAE community is strong, united, and determined to keep moving forward.’

– Henrik Balle Boysen, HAEi President

The conference theme, ‘Make A Difference,’ represents an important call to action. It reflects a shared commitment to learning from one another, constructively challenging each other, while strengthening collaborations and shaping a better future for people with angioedema worldwide. HAEi and ACARE designed the agenda to make this possible, featuring interactive sessions and multiple opportunities for patients and healthcare professionals to connect and collaborate.

Speaking on behalf of the scientific steering committee, Professor Magerl highlighted the spirit of collaboration and shared commitment that defines the angioedema field and led to the creation of ACARE, the Angioedema Centers of Reference and Excellence. This equal joint venture between the Global Allergy and Asthma Excellence Network (GA2LEN) and HAEi maintains a worldwide network of accredited centers for the management of angioedema. This network has now grown to 115 certified centers across 47 countries.

The angioedema community, in Tony’s words, is one in which everyone is a valued part, whether patient, scientist, or caregiver. “Everyone’s perspective and conversation in this room matters,” he said. That, Tony noted, is what makes the community a force that can truly change lives.

For Henrik, the community focus is at the heart of HAEi: “Everything HAEi does is rooted in a very clear purpose to support our Member Organizations to accelerate diagnosis and secure access to, and reimbursement for, the medicines that people with HAE need to live safer, fuller and happier lives.” This dedication has produced a suite of digital tools and educational solutions that help people become more powerful advocates, along with a team of determined, experienced Regional Patient Advocates providing hands-on assistance.

Tony and Henrik emphasized the impact of this support, and shared a few examples with the audience:

  • HAE TrackR, HAEi’s free digital diary for recording attacks and treatments, grew by 32% in the last year
  • Downloads of HAE Companion, your perfect travel partner with emergency cards in 47 languages and directions to HAE clinics, have doubled
  • 83% of Member Organizations now use a free HAEi-hosted website
  • On average, 95% of participants at HAEi conferences say that they will put the skills they learned to use, and 76% said the events inspired them to increase their advocacy involvement
  • We observe that Member Organizations that use three or more HAE advocacy tools or services are 50% more likely to have multiple modern therapies available
  • 87% of Member Organizations consider their Regional Patient Advocate very or extremely helpful

‘These aren’t just numbers. They’re proof that our collective work is changing lives.’

– Tony Castaldo, HAEi CEO and Chairman of the Board

Henrik highlighted that an end product of all this hard work was the 11 HAE treatments now approved, something unprecedented in the world of rare diseases and a testament to the laser-focused dedication of the entire HAEi global community. ACARE serves as another highly visible marker of achievement for the global community. ACARE, according to Professor Magerl, is deeply committed to advancing research, strengthening education, and supporting the highest standards of care.

In closing, all three speakers acknowledged the generous support of sponsors that made the conference possible:

Diamond supporter: BioCryst

Gold supporters: CSL Behring, Intellia, Pharvaris, and Takeda

Silver supporters: ADARx, Ionis, KalVista, and Otsuka

The audience was then divided into simultaneous scientific and advocacy-focused tracks, both of which we cover in this special Global Perspectives feature.