A Milestone Year for the HAEA Community: 2024 Year in Review

As the year draws close, we reflect on the collective success of our HAEA community in 2024. This year was marked by progress, innovation, and shared achievements that have paved the way for an even brighter future.

Highlights of 2024 at the US HAEA include:

• An HAEA-initiated research project that included well over 500 HAEA friends has resulted in a ground-breaking HAE-specific tool that measures Quality of Life for people with HAE in the United States. The prestigious medical journal–Annals of Allergy, Asthma, and Immunology–recognized the value of this project by publishing an article documenting the development and testing of this groundbreaking tool. The publication can be viewed by clicking HERE.
• HAEA Health Team Advocates offered our community invaluable assistance in resolving insurance denials and delays, guiding and following up on referrals to expert HAE physicians, and providing answers to countless HAE-related questions.
• This year, we introduced a new scholarship opportunity for Aspiring Healthcare Professionals, designed to provide financial support to those in the HAE community pursuing a career in any healthcare-related field.
• 250 attendees celebrated academic achievement and community spirit at the 2024 HAEA Scholarship Gala. This event reinforced the HAEA’s commitment to empowering and supporting the next generation of leaders. You can watch a recap of this event by clicking HERE.
• During the 2024 Virtual HAE IN-MOTION® and awareness events in Boston, Dallas, and Chicago, over 350 participants walked over 10,000 miles to raise HAE awareness in their communities.
• This year, we launched the HAEA academy, an online platform that offers a range of free online courses aimed at supporting HAEA friends at every stage of their HAE journey. You can access courses on topics like clinical trials, Medicare basics, the HAEA Shared Decision-Making Tool, and more by clicking HERE!
• In 2024, we hosted 9 HAEA Treatment Education Series live and on-demand webinars – designed to serve and inform the HAE community about available treatment options – that registered over 50,000 views.
• With over 21,000 plays, the HAEA Podcasts, including HAE Speaks and #BeyondHAE, continue to engage wide audiences with shared stories from HAEA community members and educational content.
• In 2024, HAEA Health Team Advocates successfully recruited community members for 7 clinical trials that offer promise for additional HAE treatment options.
• During the 2024 hae day :-) campaign, thousands of HAEA friends posted photos with an hae day :-) poster that included personalized messages about their hopes for protecting future generations.
• Since its launch, the HAEA Community Blog has shared 30 articles, reaching over 50,000 readers and fostering a sense of connection and support within the HAE community.
• This summer, the US HAEA gathered a large group of HAEA Youth Interns and Youth Leadership Council members for a 2-day leadership training in Washington, D.C. These leaders-in-training learned about social media advocacy, public speaking, and how to share their story while advocating for the HAE community.
• The HAEA Grassroots Advocacy Network – a group of 1,021 volunteer advocates dedicated to supporting people with HAE through active participation in public policy issues – wrote letters and conducted meetings to support legislation related to a variety of issues that affect people with HAE.
• On July 15th, over 200 HAEA advocates visited 113 congressional offices on Capitol Hill to deliver a vitally important message requesting action on matters that affect the future of people with HAE and their families. You can watch a recap of this event by clicking HERE.

We wish everyone in the HAEi community a joyful and healthy holiday season and a happy, healthy, and productive 2025!