HAEi’s Coordinator, Global Advocacy and ACARE, Rachel Annals, looks back at a few key highlights from the last 12 months.

2024 was a highly productive year. I worked closely with the ACARE team to deepen the links between HAEi, and the ACARE and GA²LEN teams. We held regular meetings, shared project updates, and frequently collaborated on social media.

ACARE centers

In 2024, ACARE celebrated the certification of its 100th center. This landmark also meant that you can find excellence in angioedema care in more than 40 countries. By the end of the year, the network reached 104 certified centers, with 10 more currently in the application process.

When a new center is accredited, I share this information with the relevant region’s HAEi Regional Patient Advocate (RPA), who contacts the local Member Organization (MO). This enables us to connect HAE physicians and MOs to support each other and help HAE patients and their families. The next edition of the ACARE magazine will feature an article introducing the RPAs. The article will be a valuable opportunity to showcase the incredible work of RPAs to a broader network of HAE and angioedema physicians. It will also provide HAE physicians with a point of contact with HAEi if they do not have one.

Scientific programs

ACARE has ongoing and upcoming scientific projects. One project we have supported is their HAPY initiative, which focuses on HAE in pregnancy.

HAPY is a questionnaire for patients with HAE and their physicians designed to retrospectively collect and evaluate details on the influence of pregnancy on HAE. The survey will cover the periods before, during, and after pregnancies/breastfeeding, including information on disease activity, medication, contraception, concomitant diseases, and pregnancy outcomes.

We shared information about the HAPY project with our RPAs and MOs to encourage patient participation. Using the ACARE and HAEi RPA/MO networks has enabled us to reach a broader audience for this important research.

This project is ongoing, and you can find out more or participate by contacting the project lead: Thomas.buttgereit@charite.de

ACARE Global Angioedema Forum

In October, we held the inaugural ACARE Global Angioedema Forum (GAF) in Copenhagen, drawing over 200 angioedema specialists for the two-day, information-packed event, with a special focus on HAE. In late summer, we received the tragic news of Prof. Marcus Maurer’s passing. Working closely with the ACARE team, everyone came together to ensure the event would be an exciting, informative, and fitting tribute to Prof. Maurer’s legacy and his mantra of “Never give up.”

The GAF was a huge success, with very positive feedback and enthusiasm for the next one!

2025 team planning meeting

In mid-December, HAEi’s Global Advocacy team Rachel, Fiona, and Michal, met in Berlin with colleagues from ACARE – Alice, Julia, Rebekka, Reinhardt, and Sandra. The busy, full-day meeting provided an opportunity to catch up, plan collaborative projects, discuss upcoming events, and explore initiatives and ideas for 2025. It was a productive and rewarding day, and great to catch up with each other in person. We’ll provide more details on the plans we made for 2025 very soon.

I’d like to thank everyone who helped make 2024 such a positive and productive year for ACARE. Much is still to be done, but we take heart from the progress made to date. Wishing you all a wonderful New Year!