Keynote: HAE in the Europe, Middle East, and Africa region

Standing in front of the 700 expectant faces, Professor Magerl confessed to some nerves as he introduced the theme of his talk and the 2025 HAEi Regional Conference EMEA: Embracing Opportunities.

He started by referencing the 7000 known rare diseases. Each of which was illustrated by a tiny square on his accompanying slide. HAE is, he said, just one of those squares. But it is special, because there are currently 11 licensed medications. This is outstanding in the world of rare diseases, he told the audience. For 6,830 of the 7,000 rare diseases, there is no treatment at all.

Prof Magerl posed the question: Why is HAE special in having treatment?

He said you can see an answer in the research. As late as the 1970s, the first few treatments appeared, including C1-inhibitor. Things really got a massive boost around the year 2000. Publications demonstrated increased research interest, which was immediately reflected in the introduction of new drugs. Research interest is resulting in more drugs now, and more drugs to come in the near future.

Prof Magerl suggested that the simplicity of HAE was one reason for the interest. While there may be 700 genetic mutations leading to the disease, there is one missing or faulty protein and one main symptom: swelling. HAE is also measurable in a way that means new treatments can be evaluated.

Another reason is the community of dedicated patients and physicians, as well as the collaboration between the two. Embodied by the growing partnership between HAEi and the physician-driven Global Allergy and Asthma Excellence Network (GA2LEN). “Together, we are driving up standards in HAE care with the ACARE (Angioedema Centers of Reference and Excellence) initiative,” said Prof Magerl. You can learn more about ACARE here.

So, why should we continue to work? Asked Prof Magerl, and answered “Because there is still lots and lots to do.” Most countries in this region have huge limitations on treatment. Many countries have no diagnostic tools. There remain so many questions.

‘The special recipe for success is a community of dedicated patients and physicians, and the collaboration between the two.’

To address these issues and questions, ACARE has numerous ongoing and completed projects. There are projects to phase out androgens, others to address pregnancy and HAE, and efforts to collect data in the ACARE Registry, which is nearing the milestone of 500 patients enrolled. This Registry is independent of pharmaceutical companies, Governments, and health insurers. The data is entirely anonymous and powerful.

Prof Magerl also spotlighted HAE TrackR, a free tool for patients to track their HAE and treatment. It is available in many languages, allowing almost anyone to receive a personalized treatment reminder and share data with their physician.

Prof Magerl noted that ACARE offers a wide range of physician education, which is reaching an ever-increasing number of healthcare professionals worldwide. The latest event was attended by physicians from eight African countries, which are often underrepresented in such gatherings.

In closing, Prof Magerl paid tribute to the work to date, including hosting regular meetings such as the Bradykinin Symposium and the Global Angioedema Forum in 2024. He highlighted that a group of specialist clinicians is already working on a new set of guidelines for HAE. It all highlights the potential for further improvements in HAE.

‘There are many opportunities, big and small, which we can all embrace together.’

Leaving the stage, Prof Magerl and his fellow healthcare professionals moved to the 2025 HAEi Regional Conference EMEA dedicated scientific track, which commenced with a poster presentation and associated short presentations. Click here to go to that section of our conference special. The main track continued with a roundtable featuring patient advocates on progress and lessons learned from the challenges faced.