Session 7: Global angioedema projects, initiatives, activities, and efforts

In the final session of the 2026 Global Angioedema Leadership Conference scientific track, participants heard about new opportunities and challenges in the management of angioedema.

Angioedema tools: What we have and what’s missing

Dr Teresa Caballero, along with an expert panel, discussed the now and next with angioedema tools. She outlined the following key elements:

  • There is no validated disease severity score for angioedema
  • Disease activity in adults with HAE due to C1 inhibitor deficiency can be assessed in real life with the angioedema activity score (AAS)
  • Disease control in adults with HAE due to C1 inhibitor deficiency can be assessed with the angioedema control test (AECT)
  • Health-related quality of life in adults with HAE due to C1 inhibitor deficiency can be assessed in real-life with two tools: HAE-QoL or HAE-C1INH-QoL.
  • Using treat-to-target strategies, in which short and long-term goals for HAE management are set based on patient-reported outcomes and regularly reviewed, can lead to benefits for patients
  • There remains a need for a short, easy-to-administer, easy-to-score, and validated questionnaire that evaluates HAE as a whole

News from ACARE

In a joint presentation, Reinhardt Britz, Program Manager UCARE and ACARE Networks, and Dr Thomas Buttgereit from Charité – Universitätsmedizin, Germany, provided an update on the ACARE network. Dr Buttgereit told the audience that ACARE aims to set the global standard for excellence in comprehensive angioedema care through research, education, advocacy, and interaction among ACAREs.

To date, there have been 116 audited ACAREs in the network, from across 47 countries, with 10 additional applicants.

Marcus Maurer Fellowship

A new project was the inception of the Marcus Maurer Fellowship, dedicated to empowering young physicians and researchers in the early stages of their careers. ACARE is now inviting applications, with the scholarship offering a monthly stipend and travel expenses to attend fellowship meetings and participate in scientific exchange.

ACARE activities

The speakers outlined key areas of ACARE’s activity. These were:

  • Meetings, such as this conference
  • Physician education, such as the Make A Difference Webinar series
  • The CARE registry
  • 10 Questions tool to aid diagnosis
  • Scientific projects, such as researching the discontinuation of androgen use
  • ACARE centers
  • Angioedema guidelines

ZAEBRA

A forthcoming ACARE project was ZAEBRA, a research program to address acquired angioedema, identify centers seeing these patients, and assess treatments used and outcomes. The study is welcoming participants, with further information available through the ACARE network website.

Introducing ‘Excellence on Demand’

Finally, Reinhardt Britz outlines the many free-to-access medical education tools and services offered by ACARE, including virtual conferences and on-demand learning. He presented the new Global Allergy and Asthma Excellence Network ‘Excellence On Demand’ platform, which doctors can access here. The platform offers a series of on-demand seminars on aspects of angioedema management, including in HAE.

Closing remarks

To close the scientific sessions, Debs Corcoran, Director, Research at HAEi, came on stage to thank all participants, whether in the audience or on the scientific faculty.

‘We have had wonderful talks, wonderful discussions, and exchanges of experience. It was really a fruitful meeting.’

– Debs Corcoran, HAEi