From Jess Meyers,  Communications and Advocacy Manager, US HAEA:

Bringing Together the US HAEA Community at the 2025 National Summit

The HAEA is excited to announce the 2025 HAEA National Summit in Baltimore, Maryland, this summer from July 10-13.

The theme of this year’s Summit, “Embracing a Brighter Future,” reflects our community’s optimistic spirit and commitment to growth, connection, and empowerment. This unique gathering will bring together over 1,200 people with HAE, families, caregivers, healthcare professionals, and pharmaceutical company representatives for an unforgettable experience.

HAEA Grassroots Advocacy Leaders Amplify Our Collective Voice During Rare Disease Week

HAEA Grassroots Advocacy leaders celebrated Rare Disease Week by participating in the Everylife RDLA conference that took place in Washington, DC. Showcasing the resolve and persistence of the HAE community, our 18 HAEA Grassroots Advocacy Leaders from 14 different states met with over 55 legislative offices during the 2025 Rare Disease Week. Many legislators graciously met with HAEA advocates in person, including Congresswoman Emilia Sykes (D-OH), Congressman Max Miller (R-OH), Congressman Chuck Fleishman (R-TN), Congressman Paul Tonko (D-NY), Senator Marsha Blackburn (R-TN), Senator Eric Schmitt (R-MO), and Senator Cory Booker (D-NJ). With over 1000 rare disease advocates attending this event, we are positive that our voices were heard and made an impact on key decision-makers this year.

To learn more about the US HAEA Advocacy program, you can:

Celebrating hae day :-)

hae day :-), recognized every May 16th, is a powerful reminder of what we can achieve when we come together as a community. Established through Senate Resolution 286, championed by Senator Daniel K. Inouye, this day has grown into a global movement dedicated to raising awareness, advancing education, and advocating for improved treatments for HAE.

As we approach hae day :-), the US Hereditary Angioedema Association (HAEA) reaffirms our commitment to progress—ensuring that individuals with HAE continue to receive the support, education, and medical advancements they deserve.

This year, we will be mailing out a special hae day :-) poster to US HAEA members and encourage them to spread awareness by:

  1. Snapping a photo with their poster,
  2. Tagging the US HAEA when they post their photo to social media, and
  3. Joining Team USA for HAEi’s global #active4HAE campaign!

Advances in HAE Research

Understanding how HAE affects people’s lives is at the heart of our research efforts. By collecting data and publishing studies, we help doctors, patients, and policymakers see the full picture of living with HAE.

Recent US HAEA research efforts include:

Expert Consensus on HAE With Normal C1 Inhibitor
In a joint initiative with HAEi, the HAEA Research Team convened a distinguished international group of HAE experts to deliberate and reach a consensus on the latest science regarding genetic mutations, physiological markers, diagnosis, and treatment for HAE with normal C1 inhibitor. The research teams at HAEA and HAEi worked with the authors to finalize this landmark study, which was recently published in the prestigious medical journal – Clinical Reviews in Allergy & Immunology.

Study of HAE Prevalence in the US
This study will provide the first comprehensive estimate of people with HAE (all types) in the US. The HAEA Research Team, in conjunction with HAE expert physicians and a team of demographers and statisticians, crafted a methodology for making this estimate using a large insurance claims database. Identifying the true prevalence of a rare disease, like HAE, enhances the development of targeted strategies for patient support, clinical awareness, and future drug development initiatives. The paper has been submitted to a prestigious medical journal, and we expect the published article to be available in the first half of 2025.

The US HAE-C1INH-QoL Tool
In 2024, we completed work on a unique, groundbreaking study that seeks to measure how HAE affects overall quality of life. This US-validated HAE-specific tool overcomes the limitations of other currently available options and better reflects patients’ experience with HAE. In addition, our QoL instrument: (1) truly captures the way HAE affects the everyday life of individuals and families, and (2) will demonstrate (to health insurers and others) the value of life-changing improvements in health and QoL that result from modern HAE medicines.

We published the results of our study in the prestigious Annals of Allergy, Asthma & Immunology in July 2024.

We completed a follow-up project to develop a condensed version of the instrument and establish a numerical value that indicates a meaningful QoL change when the instrument is administered over time. We will submit a manuscript to a peer-reviewed medical journal and expect the paper to be published by midyear 2025.

Pediatric Study
Preliminary work has established the scope and methodology for a study of how HAE affects children. The HAEA will partner with experts who have significant experience conducting research in the pediatric population. The work is scheduled to begin in early 2025, with plans to present preliminary findings at the 2025 US HAEA National Summit.

Study of HAE’s Impact on Caregivers
The HAEA is dedicated to providing much-needed real-world evidence regarding the perspectives and burdens associated with caregiving for someone affected by HAE. We worked with health economists and HAE expert physicians to design a data-gathering survey administered in 2024. The data has been analyzed, and we are writing a manuscript that will be submitted for publication in the second quarter of 2025.