First of all, 2024 marked the 10th anniversary of the HAEJ’s establishment! It’s hard to believe that it’s already been 10 years since our launch. This year has been a significant one for HAEJ, as we’ve taken on new challenges and actively participated in academia.

Starting with hae day :-) in May, the DISCOVERY Consortium, an industry-academia HAE consortium, and HAEJ collaborated to conduct a nationwide light-up campaign! We decided on lavender purple as HAE’s theme color and were able to have 22 symbolic towers and facilities across Japan illuminated. Among them, we visited Yokohama City and Kumamoto City, which supported hae day :-) as municipalities, to greet them and discuss future collaborations.

We also actively exhibited at medical conferences, and I gave a speech at the conference as a speaker representing the patient association. After the lecture, many doctors visited our booth to talk, allowing us to network with numerous doctors and gather information from various regions. Perhaps participation in such conferences can be a reference for other countries. We also actively learned and exchanged ideas from the perspective of genetic counseling. We need to continue discussing how to effectively utilize the support of genetic counselors and communicate this to our patient association members.

We also appeared on 2 TV programs! This was also thanks to our close collaboration with pharmaceutical companies. Through media roundtable events and direct contact with reporters, we achieved media exposure by continuing our steady appeals. We also participated in a project to increase the number of doctors who can diagnose HAE in Vietnam, together with the Japanese patient association representative. Since Japan already has fairly advanced treatments among Asian countries, we believe that it can serve as a model and provide support for other Asian countries. I hope we can continue to actively communicate and share best practices.