Debs Corcoran, HAEi’s Chief Scientific Officer, shares highlights from another excellent year for HAE research, scientific collaborations, and exchanges.

With the festive season approaching fast, reviewing the scientific gifts we have received as an HAE community in 2024 seems right. There is much to be enthusiastic about. You may have seen new data on additional potential treatment options, and research into many different aspects of living with HAE. Or read about the team of clinicians working on publishing an HAE with normal C1 inhibitor knowledge review and expert opinion on the best practice approach to diagnosing and treating this type of HAE. We are delighted to confirm this manuscript has recently been submitted for peer review in a medical journal.

21 active clinical trials are recruiting right now. In the four editions of Global Perspectives, we have brought you news on over 150 pieces of published medical research. That’s 12 pieces of new scientific knowledge for each month of the year.

Assembling the scientific community

There is a considerable amount to be proud of in how we, as an HAE community, encourage and celebrate the talents of many incredible clinical experts and pharmaceutical industry teams. And, of course, much of the research into HAE wouldn’t happen without our patient community’s motivation and enthusiasm to participate.

HAEi showcased the state-of-the-art in HAE science at two conferences in 2024. Early in the year, we met in Panama for the 2024 HAEi Regional Conference Americas. Around 100 scientists and healthcare professionals assembled at the accompanying scientific track, and 20 scientific abstracts were accepted orally or as poster presentations.

In October, the HAE scientific community came together again, in huge numbers, at the first ACARE Global Angioedema Forum. A fitting legacy to the much-missed Professor Marcus Maurer, this meeting saw 250 attendees sit down to a feast of the latest facts and figures in angioedema. 80 unique abstracts were presented, 16 as oral and 73 as posters (with some as both!), and 28 expert speakers spoke over the two days of the conference.

HAEi’s patient-driven research program

At HAEi, we don’t just offer a platform for scientific exchange; we conduct our own research to support the HAE community advocate for access to lifesaving and life-giving treatment. Here’s an update on what happened in 2024.

Kick-off conversations about HAEi Heat Map
Our Heat Map survey helps identify pockets of undiagnosed HAE and focus awareness efforts within a particular country. In 2024, the Heat Map Survey was undertaken in the Philippines, and discussions started about future studies in Thailand, Vietnam, Bangladesh, the Democratic Republic of Congo, and Egypt.

Baseline burden of illness
This study turns patient experiences into evidence of unmet need. We have conducted the survey in India, Mexico, and South Africa. We are working on bringing the study to the Philippines, Vietnam, Thailand, and China.

Pharmacoeconomic, socioeconomic, and quality of life assessment
The data collected can be used with Health Ministries to advocate for continued access to modern HAE therapies. At present, we have completed these studies in the US, the United Kingdom, the Nordic countries, Australia, and New Zealand. In 2024, we have an ongoing project underway in the German-speaking countries.

State of Management of HAE
State of Management reports focus on the current treatment situation and its impact on people with HAE in several countries in a particular region. We use the data to raise awareness and influence healthcare and policy recommendations. In 2024, we conducted State of Management surveys in HAEi’s European regions, with SEE data presented at the 2024 HAEi Global Leadership Workshop breakout session and European Union country data used in a round table with members of the European Parliament. We are about to close our survey for the Middle East and North Africa region. We are working on a survey for the Asia-Pacific region to be presented at next year’s regional conference.

A special mention: The US-validated HAE quality of life tool
A US HAEA-driven project realized the development and publication of a new, HAE-specific, US-validated quality-of-life tool. In July 2024, this was published online in the important journal Annals of Allergy, Asthma and Immunology. This new tool could potentially be validated in other countries to support advocacy for modern HAE treatments.

Into 2025

In addition to the vast range of HAEi research continuing in 2025, the scientific team will return to the Asia-Pacific region in March. A dedicated scientific track will be part of the 2025 HAEi Regional Conference APAC. We anticipate exceptional HAE oral and poster presentations and lively discussions from healthcare professionals across the region.

There may not be snow piling up, at least where I sit in London right now, but great drifts of data are waiting to be analyzed. May all your evidence-based wishes come true in the New Year!