HAEi’s CEO and Chairman of the Board, Anthony J. Castaldo, and HAEi’s President, Henrik Balle Boysen

Dear HAEi Friends,

Welcome to this fourth and final edition of Global Perspectives for this year. With 2024 drawing to a close, we reflect on a highly successful year powered by the motivation, energy, and enthusiasm of our HAEi global advocacy community.

Our numbers continued to grow, and we welcomed member countries 100 and 101 to the HAEi family in HAE Zimbabwe and HAE Nepal. Both are led by determined and driven advocates already making significant progress in their countries. We finish 2024 with an RPA team of 12 proven advocacy leaders, our “on-the-ground forces” implementing HAEi’s programs, activities, and services worldwide.

Our tools and expertise are always ready and available to support these new organizations as they are for every single Member Organization (MO). In addition, we continue fulfilling our commitment to developing new and vital resources. In 2024, we launched HAEi FocalPoint as a ‘one-stop’ tool for all MOs to interact with HAEi, a Travel and Relocation guide, and updates to our essential HAEi Connect and HAE TrackR resources.

While 2024 brought many positive achievements, it was also marked by profound loss. We were deeply saddened by the tragic passing of our Chief Medical Advisor, Professor Marcus Maurer, in late July. Marcus was more than a brilliant mind—he was an inspirational leader, a steadfast ally, and a dear friend to the global HAE community. The loss of Marcus is beyond words, and he will be sorely missed. We dedicate ourselves to continuing his legacy.

A fundamental part of Marcus’ legacy is HAEi’s partnership with GA²LEN on the Angioedema Centers of Reference and Excellence (ACARE). In 2024, the partnership delivered the first ACARE Global Angioedema Forum 2024, affectionately known as the GAF. For physicians and scientists, the GAF was a two-day celebration of the science behind angioedema and its treatment, focusing on HAE. The success of the meeting is a tribute to Marcus.

In-person meetings remain the lifeblood of HAEi’s efforts to share the state-of-the-art in HAE advocacy, and we saw two fantastic patient-led meetings in 2024: the HAEi Regional Conference Americas and the HAEi Global Leadership Workshop. Across both meetings and the GAF, we welcomed 1,400 participants, representing many patients, caregivers, advocacy leaders, healthcare professionals, and pharmaceutical representatives currently active in HAE.

On behalf of the Board, the HAEi Leadership Team would like to thank everyone who has helped make 2024 such a great success. Together, we have made considerable progress; however, we know our work will only be done when there is approval and reimbursement of lifesaving therapies for everyone suffering from HAE. Looking ahead, 2025 promises to be a year of continued vigorous support for MOs as they work to improve the lives of people with HAE in their respective countries. We are excited about the upcoming 2025 HAEi Regional Conference Asia-Pacific (APAC) in Manila, Philippines, in March and are working hard towards a second conference for Europe, Middle East, and Africa (EMEA) in the fall of 2025. Stay tuned for more news! Our regional gatherings provide exceptional opportunities for connecting with HAEi friends and sharpening the advocacy skills that lead to breakthroughs in access to HAE therapies.

Warm regards and Happy Holidays.