HAEi Global Perspectives articles – Fall 2024
Honoring HAEA Scholars: Highlights from the 2024 HAEA Scholarship Gala
The 2024 HAEA Scholarship Gala was an evening to remember, bringing together outstanding scholarship recipients to celebrate their remarkable achievements. Held at the Hyatt Regency Washington on Capitol Hill in Washington, D.C. in July, the Gala celebrated academic achievement and community spirit while reinforcing the HAEA’s commitment to empowering and supporting the next generation of leaders.
The Gala highlighted heartfelt speeches delivered by scholarship recipients who shared personal journeys, challenges, and aspirations for the future. Their stories are a testament to the resilience and determination of the HAEA community.
You can watch the full Gala event at https://vimeo.com/992191547?.
HAEA Advocates Voice Their Concerns During Capitol Hill Day Visits
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. During these meetings, our HAEA volunteer advocates voiced their support for legislation related to medication access and research funding to support new and improved therapies.
HAEA advocates prepared for Capitol Hill Day by participating in an engaging training session where they learned about how to use their stories to influence policymakers.
Thank you to all who attended the HAEA 2024 Capitol Hill Day! Your efforts to inform our elected representatives were well received and promise to have a positive impact on legislation that affects the HAEA community.
You can watch a recap video of this event at https://vimeo.com/1006313150
Breakthrough HAEA-Initiated Research on Quality of Life Published in a Prestigious Medical Journal
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 unique research by recently publishing the article we prepared that documents the development and testing of this groundbreaking tool. The study can be viewed by clicking HERE.
Our Quality of Life tool is designed to benefit our community by helping physicians and researchers:
- Accurately captures the way HAE affects the everyday life of individuals and families,
- Demonstrate (to health insurers and others) the value of life-changing improvements in health and quality of life that results from modern HAE medicines, and
- Avoids the under-reporting of challenges faced by people with HAE in the US that is seen in other currently available Quality of Life tools.
Please stay tuned for information on other exciting ongoing HAEA research projects that are all designed to help improve the health and well-being of everyone in our community.
Celebrating Youth Advocacy Month by Recognizing Our Next Generation of Leaders
Every October, we celebrate Youth Advocacy Month by showcasing the stories and activities of the youngest advocates in our community. This year, we are thrilled to announce the launch of the Youth Advocacy Achievement League, an elite group of young advocates who have stepped up to raise HAE awareness, advocated for legislative change, or made an impact in their local community. Over 30 remarkable young individuals have been nominated to be members of the League.
You can learn more about their inspiring activities on the HAEA Youth instagram, @HAEAyouth, and celebrate the difference they are making as leaders and changemakers. These advocates are the next generation of HAEA leaders and their efforts serve as a powerful reminder of the importance of youth voices in driving meaningful change. Stay tuned to learn more about these amazing young people and join us in honoring their achievements throughout Youth Advocacy Month!