The last couple of months have been a vibrant period for HAE Australasia, marked by growth, education, and community engagement. Here are some of the key highlights from this time.
Membership Growth
HAE Australasia has seen encouraging growth in its membership, welcoming 10 new members over the past two months. This increase reflects the organisation’s commitment to providing support and resources for individuals and families affected by Hereditary Angioedema (HAE).
Educational Webinars
In July, HAE Australasia hosted the second webinar of the year, focused on women and children affected by HAE. The session featured Professor Connie Katelaris, who provided valuable insights on HAE in relation to women’s health and pregnancy. Additionally, paediatric immunologist Dr. Pinzon Charry was a special guest, sharing crucial information on children’s health with HAE, including testing and treatment guidelines.
We have another engaging webinar scheduled for October 16th. This session will focus on patient stories and highlight helpful tools that all members should be using to better track, understand and manage their HAE. By sharing personal experiences and practical resources, we aim to empower our community and enhance overall management of the condition.
The success of our webinars this year has been remarkable, prompting Zoe to create a dedicated webinar hub on the HAE Australasia website. Members can now easily access slides from past webinars, ensuring that valuable information is just a click away. Additionally, there’s a suggestion form available for members to propose future webinar topics, allowing us to tailor our offerings to the needs and interests of our community.
Travel Grants for the 2025 HAEi Regional Conference APAC
We have had an incredible response to our recent call for travel grants applications, aimed at patients and their caregivers to attend the 2025 HAEi Regional Conference APAC, in Manila, Philippines. We will soon commence the process of allocating grants by picking names out of a hat for as many members as possible.
The upcoming conference promises to be an enriching experience, offering a valuable opportunity for our members to interact with peers from across the region. Attendees will have the chance to engage with experts, share experiences, and learn about the latest treatments and advancements in HAE management.
2024 HAEi Global Leadership Workshop, Copenhagen
Most of the HAE Australasia board has just returned from the 2024 HAEi Global Leadership Workshop (GLW) in Denmark. The GLW was held concurrently with the ACARE Global Angioedema Forum 2024 (GAF). With 750 participants from member organizations, physicians, and pharmaceutical companies representing 100 countries, the event provided a unique platform for collaboration and knowledge exchange.
During the workshop, attendees learned about several promising new medication trials and research advancements in the field of HAE. Discussions highlighted significant discrepancies in prophylaxis and on-demand treatment options across different countries, emphasizing the ongoing challenges faced by patients worldwide. However, there was a sense of encouragement as various member organizations, HAEi, and pharmaceutical companies demonstrated a collective commitment to bridging these gaps in treatment access.
The enthusiasm and dedication exhibited by participants to strive for equality in care, regardless of geographical location, reaffirmed the importance of global collaboration. HAE Australasia is excited to bring these insights back to our community and continue advocating for improved treatment options and support for all individuals affected by HAE.
HAE Australasia Website Updates
The HAE Australasia website has undergone several upgrades aimed at enhancing member resources and accessibility. A new “Youngsters” page has been added, providing engaging content tailored specifically for younger members. Additionally, downloadable Brady Club books are now available, offering fun and informative materials for children and families affected by HAE. This space is ever-evolving, and we are excited to see how this new page develops further.
A brand-new Clinical Trials page has also been launched, keeping our members informed about ongoing trials they may be eligible to participate in. This resource is crucial for those interested in exploring new treatment options and contributing to important research in the field.
It’s been an exciting and very busy couple of months for HAE Australasia, and we’re looking forward to the next couple of months as we wrap up 2024. With our upcoming webinar in October, a leadership strategy meeting in November, and continued growth within the organization, the future is shaping up to be even more promising.