HAEi What’s New
Executive Vice President and Chief Advocacy Officer for HAEi, Fiona Wardman, and Executive Vice President and Chief Operating Officer, Jørn Schultz-Boysen, gave a concise briefing on the latest developments in the tools, technology, and opportunities HAEi offers the community, including some projects which you might have missed.
HAEi LEAP 2026 and HAEi Youngsters Social Media Internship
HAEi LEAP is a fantastic program for young advocates aged 16-25. Global Perspectives notes that at the time of publication, the application process has closed. You can read more about HAEi LEAP here.
In addition, a young person’s social media internship program is also offered, providing skills in social media, writing, advocacy, and working as part of the HAEi team. You can learn more about the social media internship here.
Pilot project in South America and Mexico
A pilot impact meeting was held in South America and Mexico. Member Organization (MO) leaders from across the region completed an intensive planning course to set out a 12-month advocacy plan. The meeting is designed to help MOs grow and increase advocacy confidence and skills. Although a pilot, HAEi hopes to run this project in other regions in the future, so stay tuned.
HAE videos to educate doctors across the Asia Pacific region
Working with HAE experts in the region, HAEi produced four short educational videos for healthcare professionals. These videos focused on the clinical aspects of the disease, including spotting symptoms, diagnosis, and treatment. You can see the complete set of videos here.
Tailored program in Brazzaville
To expand knowledge in an area with limited internet access, a team will take a video to hospitals across Brazzaville, the capital of the Republic of the Congo, to educate healthcare professionals. The videos show HAE symptoms, treatments, and what to do in an emergency. In just five minutes, physicians can get everything they need to know. This type of program could also be rolled out in other African countries where infrastructure may limit access to online education.
HAE guidelines for Pakistan
Pakistan has committed HAE doctors and a patient advocacy group. HAEi is bringing these groups and more interested stakeholders together to establish a consensus on HAE guidelines specific to Pakistan that align with current practice and available treatment options in the country.
HAEi Companion and HAE TrackR apps get a refresh
Jørn highlighted that both HAEi Companion and HAE TrackR are getting updates. These include:
- An improved user interface
- Easier download of emergency cards
- Quality of life questionnaires in HAE TrackR to aid treatment optimization
- Access to notifications through emails and text messages
HAEi website and Global Perspectives
Both of HAEi’s key information resources have been made even easier to access. Global Perspectives is now fully online, and the HAEi website is easier to navigate and search. Both websites now have automated translation into your preferred language.
HAE guides in translation
Understanding HAE and Women with HAE are now available in more languages than ever before.
Clinical trial recruitment
HAEi continues to optimize its partnerships and protocols for supporting pharmaceutical company trial recruitment. HAEi is always looking to work with MOs on this, so please respond if contacted about clinical trials. Your data is handled in full compliance with data protection regulations (GDPR), and HAEi can help support patients throughout the process.
HAEi Advocacy Academy
Whether you’ve used this resource before or not, HAEi Advocacy Academy is bigger than ever. Whether as a patient or caregiver, there’s so much education available on how to be a better advocate, with new modules and online learning being added regularly.
The HAEi Global Leadership Workshop returns in 2026 with a new name
The HAEi leaders reminded everyone that the 2026 Global Angioedema Leadership Conference (formerly the HAEi Global Leadership Workshop) will take place in March. This meeting will bring together HAE leaders from across the globe in science, medicine, and advocacy.
Support is always available
In conclusion, Fiona and Jørn referenced the bespoke support that is always available to every HAEi MO. This can include letters to governments and health ministries, and even HAEi advocates attending meetings to support MOs and share expertise and knowledge with policymakers. Just contact your RPA if you’d like to know more.
