From Makiko Matsuyama, HAE Japan

HAEJ (HAE Japan) has remained highly active throughout the year, implementing initiatives almost every month. One of our key priorities has been to clearly communicate the role and value of patient organizations—not only to the general public, but also to physicians—by reaffirming the importance of patient associations within the medical community.

Public awareness activities were a major focus in 2025. At hae day :-) in May, we once again conducted the nationwide Purple Light-Up campaign following last year’s success. A total of 48 landmarks and towers across Japan were illuminated in purple, including large-scale sites such as Tokyo’s Rainbow Bridge, generating significant media coverage. In February, HAEJ organized Rare Disease Day (RDD) Kobe, an event of high interest to pharmaceutical companies, and cooperated on an interview article published by a major national online media outlet. In addition, Japan hosted the World Expo this year, and on May 23 (Intractable Diseases Day), we were invited to speak about HAE at an RDD event held at the Expo. Members of the Imperial Family were also in attendance, and the event received wide media coverage, becoming a valuable opportunity for awareness.

Patient engagement continued to expand nationwide. Patient networking meetings were held across Japan, including—for the first time—one in Kagoshima. Many patients still face difficulties accessing appropriate treatment, particularly in regional areas, and we believe it is essential to reach beyond major cities. This year, the HAEJ website was also fully renewed with support from pharmaceutical partners, resulting in a modern and well-designed platform. We will continue to strengthen website operations and regularly update resources for patients and families.

Engagement with the medical community remained strong. HAEJ exhibited booths and delivered presentations at dermatology, otolaryngology, and allergy society meetings, including a session at the Dermatological Society meeting that received an exceptional standing ovation from attending physicians. We also actively participated in media seminars and public lectures organized by pharmaceutical companies. Looking ahead, we value continued collaboration through international meetings such as the APAC Conference and the upcoming Madrid conference, and we hope for more opportunities to engage with colleagues from Europe and the United States. With new treatments expected to launch in 2026, the treatment environment in Japan continues to improve, and we look forward to further expanding our activities with energy and commitment.