The US HAEA is committed to delivering engaging and informative programs, services, and activities to our expansive membership of over 8,000 individuals. These initiatives aim to unite the HAE community in pursuit of our collective and shared objective: enhancing the quality of life for those with HAE.
2023 US HAEA National Summit – Living Beyond Boundaries: After four long years apart, the HAEA hosted an unforgettable and remarkable 2023 US HAEA National Summit that unified nearly 1,200 HAE friends in Orlando, Florida. Together, we embarked on an amazing 3-day journey filled with thought-provoking youth workshops, general sessions that featured a blend of heartfelt patient stories and informative industry and physician presentations, and fun-filled activities, including an inspiring HAE IN-MOTION® awareness walk.
The Professional-Scientific Track drew an audience of nearly 200 healthcare professionals, physicians, researchers, and scientists, highlighting key updates in HAE diagnosis and research, and also featured an engaging poster-viewing session, showcasing a total of 28 posters that highlighted the latest advancements.
A genuine thank you to our united HAEA community for making this 2023 Summit a memorable success!
>> Read more about the exciting details of this event
HAE IN-MOTION® – Step It Up for HAE: This fall, members of the HAE community embraced our challenge to Step it Up for HAE, and raised awareness through our 2023 HAE IN-MOTION® event! Participants enthusiastically tracked their miles as they engaged in a diverse range of activities, from walking and running, to cycling and swimming. This collective effort aimed to achieve an impressive goal of 30,000 miles, uniting the community in a fun and collaborative way that also served as an effective platform for educating others about HAE!
Additionally, the HAE IN-MOTION® event hosted at our 2023 US HAEA National Summit proved to be an opportunity for members of our community to gather together and mingle after four long years apart. From leisurely walks along the hotel’s beautiful nature trail, to playful lawn games and an ice cream stand, attendees had a chance to unwind and enjoy the outdoors, all while celebrating their HAE journeys.
All funds raised from these events will support key HAEA programs including the Pam King HAEA Scholarship Program, the Chris Whalen HAEA Compassion Fund and the HAE Research Fund.
HAEA Community Blog: The HAEA Community Blog is a platform that allows people with HAE to share their unique stories on a wide variety of topics ranging from emotional health, navigating insurance challenges, and journey to diagnosis and treatment.
“So, you’ve completed your diagnostic journey and have been diagnosed with Hereditary Angioedema (HAE). Your doctor has prescribed a treatment protocol and you discover that your healthcare insurance will not cover the cost of the medicine. Now what? This situation can be all too common for people with a rare disease and their caregivers, but it is not impossible to overcome. Just as you went through a diagnostic journey, the second part will be a care coverage journey.”
>> Read You, Your Medications, and Your Healthcare Insurance
“When I was younger and still having several HAE attacks a month, I would have never dreamed I could study abroad in college, but I was determined not to let my HAE limit me.”
Advances in Research:
HAE Specific Quality of Life (QoL) Instrument: In the Fall of 2021, the HAEA initiated a research study to redefine how HAE affects overall quality of life. The research enabled us to design and validate a quality of life questionnaire that truly captures the way HAE affects the everyday life of individuals and families in the US. This instrument will demonstrate to health insurers and others the value of life-changing improvements in health and quality of life that result from the development and availability of modern HAE treatments. A medical journal article featuring the new HAEA QoL instrument will be published in the Fall of 2023.
HAEA Sponsored Study Reveals Harmful Impact of Insurance Denials for HAE Medicines: Members of our community who face insurance company decisions to delay or initially deny coverage for a prescribed HAE medicine are forced to somehow cope with a wide range of devastating consequences. The HAEA commissioned a study to highlight the disturbing and costly effect of delays and denials as part of our continuing campaign to reduce delays and denials by demonstrating the holistic value of HAE medicines.
In our study:
- 70% of participants reported an increased frequency of attacks resulting from insurance delays,
- More than 50% missed work/school days because of increased attacks,
- 90% reported greater anxiety,
- 25% of respondents reported an increase in costly urgent care or emergency department visits,
- Almost all participants reported that insurance-related problems had a negative impact on health, family, and work/school life.
>> You can also access the AAAAI Press Release
New Continuing Medical Education (CME) for Healthcare Professionals: Educating the physician community in the latest HAE clinical care advances helps drive continued improvements in the health of the HAEA community. That is why the HAEA produced and launched a new, free CME program for Medical Professionals – Updates in Hereditary Angioedema Care From the HAEA. The program is designed to meet the educational needs of healthcare professionals involved in the diagnosis and/or management of people with HAE. This CME provides physicians, nurses, or pharmacists the opportunity to earn free continuing medical education credits, and spread awareness on HAE and current treatment guidelines.
