Welcome to the 2025 HAEi Regional Conference APAC
Proving that every region and country is equally important, HAEi Chief Executive Officer Tony Castaldo and HAEi President Henrik Balle Boysen greeted the around 300 patient, caregiver, and scientific participants from 15 countries across the Asia-Pacific (APAC) region, and encouraged all to apply the theme of the conference by ‘Embracing Opportunities’ to learn, share, and network with their friends and peers.
Henrik reminded the audience that HAEi is motivated by a deep sense of caring and commitment to the HAE community. At the same time, Tony noted that the community is now globally 101 member countries strong, with 17 member countries in APAC alone.
Having first-hand knowledge of the challenges of living with and suffering from HAE, Tony and Henrik made clear that they and everyone in HAEi look positively to tools, solutions, and opportunities.
Tony remarked that the first step towards greater opportunities is understanding the range and magnitude of issues. Before the conference, HAEi conducted our State of Management Survey across the APAC region. From this, Tony highlighted some vital statistics:
- Out of a population of 4.1 billion people in the APAC region, we can expect a population of 137,000 people with HAE.
- Only 3,500 people in the region currently have a confirmed HAE diagnosis: just 2.5% of the potential population. Tony commented that this showed that there is a lot of work to do.
Moving on to knowledge and awareness, Tony indicated that all participating Member Organizations (MOs) felt that general and emergency room physicians lacked a good understanding of HAE. The picture was more positive with doctors specializing in HAE: Three-quarters of MOs highly rated their HAE knowledge regardless of specialty.
Adding to these findings, Tony said that when patients and physicians work together, it creates a tremendously positive situation. More togetherness, he said, leads to more research and, ultimately, more investment from the pharmaceutical companies, which leads to more options to treat and prevent HAE attacks.
95% of identified rare diseases have no treatment whatsoever.
Moving on to the impact of HAE across Asia-Pacific, Tony indicated that 59% of survey respondents felt that HAE had a high impact on daily life, and over half (53%) felt that it significantly impacted patients’ ability to reach their potential.
Tony highlighted that HAE now has 4 modern preventative treatments and 4 on-demand therapies. In addition, there are 3 older medications: androgens, tranexamic acid, and fresh frozen plasma. The survey results indicated 5 countries where the 3 older medications are the only options for patients. For some, importing medicine from elsewhere is the only way to access these older therapies.
Tony told the assembled audience that access to medication is a patchwork quilt across APAC. On a positive note, he showed that one-third of MOs reported access to 1 modern HAE preventative or on-demand therapy.
“Right now, no country in APAC has access to all modern HAE therapies.”
Moving onto advocacy with law makers, data from the survey showed that governments in the region view rare disease and HAE as a very low priority. Tony was adamant that convincing governments to change priorities and provide access to modern HAE therapies is possible. HAEi has a proud track record of successful advocacy action with governments, which is already happening in the Asia-Pacific.
Tony reiterated that availability and access to modern HAE therapies is the number 1 challenge facing the APAC region, but this is a call-to-action. Action is what will make the difference!
Drawing their welcome to a close, Tony and Henrik thanked diamond supporter BioCryst; gold supporters Pharming and Takeda; and silver supporters Astria, CSL Behring, KalVista, and Pharvaris, for their generous support for the conference. Both leaders also took a moment to thank the HAEi organizing team before welcoming Professor Philip Li to the stage for the evening’s keynote address.