A Year of Growth, Connections, and Inspiration: HAE Australasia’s 2024 Highlights and Goals for 2025
It’s been a fantastic year for HAE Australasia, filled with exciting developments, new faces, and powerful connections that have made 2024 a year to remember. From expanding our team to hosting dynamic webinars, growing our membership base, and making impactful connections on the global stage, we’ve truly stepped up our efforts to support people living with HAE across Australasia.
A Year of Growth and Expansion
One of the most exciting highlights of this year has been the growth of our membership and the increased capacity to connect with more people than ever before. Thanks to the hard work of our dedicated team, we’ve ramped up our social media presence and armed our members with the tools, tips, and information they need to live their best lives with HAE. We’ve strengthened our online presence, ensuring that vital resources are just a click away for those who need them.
HAEi Global Leadership Workshop, Copenhagen
In October, 5 members of our 6-strong team ventured to Denmark for the 2024 HAEi Global Leadership Workshop, where we had the opportunity to forge new connections with HAE advocates and medical professionals worldwide. This inspiring experience honed our advocacy skills and introduced us to a new Relocation Tool, a Conference Planning tool, and the amazing work of the HAE Youngsters and their fabulous podcast. We left Denmark with fresh perspectives, new friends, and a renewed passion for advancing equal care for people with HAE in Australasia.
Webinars That Make a Difference
This year, we were proud to launch a successful three-part webinar series to keep our members informed and engaged. Despite the challenges of spanning 2 countries and up to 7 time zones, we reached more than 60 participants (huge for our membership size), sharing essential knowledge on topics like HAE Basics, Women’s Health, and Children’s Health. We’re committed to providing our community with the latest tools, research, and support to help manage HAE and improve quality of life.
What was new in 2024?
Early in 2024, we introduced new videos to our website sharing the powerful stories of teenagers and young adults with HAE, highlighting how access to modern prophylactic treatments transformed their lives. These videos revealed the profound improvements in quality of life for those with access to preventative therapies, contrasting life before and after treatment. A physician’s perspective reinforced the benefits of managing HAE proactively rather than waiting for attacks. Currently, only Australia offers access to these modern therapies in the region. By showcasing these experiences, we aim to strengthen our advocacy efforts and drive change for broader access to preventative treatment options.
In 2024, we also overhauled our website, adding new pages that better serve our community. Our new Youth page and linked toolkit offer a wealth of resources for younger members, while our Children’s page now includes valuable links to the Brady Club and the Brady Club Activity Books. We also launched a dedicated Clinical Trials page to inform members about ongoing regional research and trials and a Webinar Hub where members can submit suggestions for future topics.
To help us manage the growing workload, we were thrilled to welcome a new Operations Coordinator to the team in March. This role has been instrumental in overseeing social media, website updates, and other operational tasks, allowing our team members to focus on their areas of expertise.
Finally, we were honored to have Dr. Alberto Pinzon Charry join us this year to share insights on children with HAE. Prof. Connie Katelaris has continued supporting our webinars, providing invaluable expertise and keeping us informed about the latest clinical trials. Our ongoing collaborations with physicians have been vital to our success this year.
Looking Ahead to 2025
The momentum doesn’t stop here! In 2025, we’re excited to continue expanding our reach and growing our membership base. We’ll use our social media platforms and revamped website to connect with more individuals across Australasia, especially focusing on youth engagement. We recognize the importance of supporting younger members and helping them feel connected and empowered, and we plan to dedicate more resources to this in the year ahead.
Another major goal for 2025 is raising funds for in-person patient meetings. We’re thrilled to have secured several travel grants to send a strong group of members to the 2025 HAEi Regional Conference APAC in Manila this March. We can’t wait to share what we have learned and successes with you at the end of next year!
Looking Forward to Even Greater Things
We’ve accomplished so much in 2024, and we’re energized for the year ahead. With a growing team, an expanding network of supporters, and a community of people with HAE who continue to inspire us daily, we’re confident that 2025 will bring even more exciting opportunities to make a difference. Here’s to another year of growth, connection, and progress for HAE Australasia!
