From Fiona Wardman, HAE Australasia
HAE Australasia: Strengthening Community, Expanding Access
HAE Australasia continues to focus on supporting patients and families across Australia and New Zealand through education, awareness, and advocacy, while working closely with industry and government to help ensure access to as many treatment options as possible.
Australia | HAE Australasia
In Australia, access to treatment continues to move in a positive direction, with the recent addition of another long-term prophylactic therapy, Andembry, to the PBS. This now brings the total number of prophylactic treatment options available to patients to four. As we know, not all treatments work for everyone, so having multiple options is critical to helping patients find what works best for them and fits into their lives.
On Saturday 14 February, we were pleased to host a very successful patient meeting in Sydney, bringing together around 70 participants, including patients, caregivers, physicians, and industry representatives. The meeting provided a great opportunity for the community to come together, share experiences, and hear the latest updates on hereditary angioedema (HAE).
We were honored to welcome Professor Markus Magerl from Charité Hospital in Berlin as our special guest. Professor Magerl spoke about the international guidelines and why they are so important in supporting consistent, high-quality care and improving patient outcomes.
Professor Katelaris covered a range of key topics, including HAE treatments, HAE with normal C1-inhibitor, and considerations for pregnancy and children. We also heard a patient story, along with updates from the HAE Australasia Board on available resources from both HAE Australasia and HAEi. The day included an open discussion on advocacy and a Q&A session, and was very well received, with great feedback from participants.
In March, HAE Australasia board members, including Professor Katelaris, took part in the Camino walk ahead of the 2026 Global Angioedema Leadership Conference in Madrid. Over four days, we walked the French Way alongside patients, caregivers, and industry representatives from around the world, raising awareness of HAE and strengthening connections across the global community. We would like to thank Sarah and Maria from the Spanish HAE Association (AEDAF) for organizing this event.
New Zealand | HAE Australasia
On 11 March 2026, HAE Australasia board member Olivia Worthington was invited to speak at the New Zealand Parliament event for the launch of the Voice of Rare Disorders White Paper, hosted by Rare Disorders NZ. Olivia shared her personal journey with HAE, using her story to make the case for better diagnosis pathways and access to modern treatments for rare disorder patients in New Zealand. The event drew over 100 influential attendees. Health Minister Hon. Simeon Brown attended and gave an assurance that work on implementing New Zealand’s Rare Disorders Strategy would begin, with a first implementation meeting scheduled for 6 May. For HAE Australasia, placing HAE within the broader rare disorder conversation strengthens the ongoing case for prophylactic therapies still unavailable to New Zealand patients.
HAE Australasia remains committed to building a strong, informed, and connected community, while continuing to advocate for improved access to treatment and care for all people living with HAE.
