From Jess Myers, Communications and Advocacy Manager, US HAEA
Key US HAEA Highlights in 2025
1,400 US HAEA Friends Share a Memorable 2025 HAEA National Summit in Baltimore, Maryland
The 2025 HAEA National Summit, held in Baltimore, Maryland, was an incredible success! From July 10–13, more than 1,400 HAEA community members, including people with HAE, their caregivers, medical professionals, researchers, and industry sponsors, came together for an unforgettable weekend of education, empowerment, and connection.
We look forward to continuing this momentum and building on the connections made in Baltimore as we work toward a future where everyone with HAE has access to the medicine and support services they deserve.
US HAEA Publishes First-Ever Study Showing the Number of People Diagnosed with HAE in the United States
Recently published in a top-rated peer-reviewed medical journal, this landmark HAEA-initiated study featured collaboration with leading HAE experts and specialists in data mining and demographic analysis.
We now estimate that nearly 10,000 people in the U.S. have received a diagnosis of HAE. As noted earlier, this number includes all forms of the condition—not just those caused by C1-INH deficiency—and provides the clearest picture yet of the HAE population in the U.S.
US Congress Acknowledges the Need for Research on HAE with Normal C1 Inhibitor
In a Senate appropriations committee report released in June, legislators stated, “The Committee applauds the previous work across National Institutes of Health (NIH) to identify genetic mutations that cause HAE and to advance treatment options and care for affected individuals, moving a once deadly rare disease to a largely manageable chronic illness. However, the Committee notes that challenges persist in diagnosis, treatment, and care for HAE patients with Normal C1 Inhibitor and encourages the NIH to work with other Institutes and Centers, and the stakeholder community, to advance research in this key area.”
The tireless efforts of the HAEA community have resulted in elected officials finally understanding the unmet needs of those with HAE with Normal C1 Inhibitor. We are excited to see this progress in an official congressional record, and we look forward to working with legislators to improve diagnosis, treatment, and access.
Looking Towards A Positive Future for US HAEA Members in 2026
In 2026, the US HAEA hopes that people living with HAE experience greater confidence, independence, and peace of mind in their daily lives. We envision a future where timely diagnosis is the norm, treatment options are accessible, and no one faces HAE alone. Through continued advocacy, education, and research, we strive for a world in which people with HAE can fully pursue their goals, knowing their condition is understood, well-managed, and supported at every stage of life.
Create a True Partnership with your Physician to Better Manage Your HAE
HAEA Friends have access to an exciting (and free!) resource to prepare for their next HAE appointment: The HAEA Shared Decision Making Tool (HAEA SDM).
By answering a series of questions, HAEA SDM summarizes:
- Recent experiences with HAE,
- Current treatments, and
- Preferences and what matters most when considering an HAE treatment.
This information is compiled into a downloadable one-page summary overview that serves as a basis for a more collaborative treatment-oriented discussion with your HAE physician.
HAEA SDM will help our community and their doctors create a treatment plan that truly aligns with individual needs.
The HAEA SDM Tool is available here: https://www.haea.org/pages/p/sdm_tool
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 the journey to diagnosis and treatment.
Featured Blog Articles
“Traveling with Hereditary Angioedema (HAE) may require extra planning, but it doesn’t have to hold you back. Whether it’s a road trip, international adventure, or quick weekend getaway, being prepared can give you the confidence to enjoy your journey safely.”
6 Tips to Prepare for Traveling with HAE at https://www.haea.org/pages/bp/Blog35_Travel
“If I could tell you to wake up tomorrow and do one thing, it’s to use your voice. No matter how small your follower count is, no matter how unimportant you think your story is, every single voice and story matters.”
Read Gen Z Advocacy in 2025 at https://www.haea.org/pages/bp/blog36_Zach
Research Updates
The HAEA’s research activities focus on generating data and publishing studies that advance the understanding of HAE’s impact on the lives of our community. Our 2026 research program is outlined below:
- HAEA Quality of Life Instrument Short Form: In 2024, we published a medical journal article introducing a new HAE Quality of Life Instrument (HAE-C1INH-QoL). This HAE-specific tool addresses the limitations of currently available options and better captures our community’s experience with HAE. We recently completed our work to develop and validate a short-form version. We have prepared a manuscript that will be submitted to a medical journal in early 2026.
- Study Validating Our HAE-CIINH-QOL Instrument for Patients Diagnosed with HAE Normal C1-Inhibitor: Our HAE-C1INH-QoL instruments (long and short form) are only validated in people with HAE due to C1 inhibitor deficiency. It is important that members of our community diagnosed with HAE with normal C1INH also have tools to measure their quality of life. We have completed a study that validates the HAE-C1INH-QoL instruments for the HAE normal C1INH population using two datasets that included 160 participants. We are preparing a manuscript, which will be submitted to a medical journal in mid-2026.
- Pediatric Study on HAE: We are in the process of completing data-gathering using an innovative, validated approach where children express the burden of HAE through artwork they create. This research is being designed to produce high-quality data that highlights unmet needs and issues that are important to the pediatric population. We expect this project to result in a peer-reviewed medical journal publication that we will submit later in the second quarter of 2026.
- The Economic and Socio-economic Burden of HAE Caregivers: The HAE burden of illness and its wide-ranging economic and socio-economic impact on individual patients are well known and detailed in an HAEA study published in 2021. What is less well understood, however, is how the quality of life and well-being of caregivers are affected by looking after people with HAE. Moreover, to our knowledge, there is little, if any, data that quantifies caregiver burden. We designed and conducted a comprehensive survey that characterizes the caregiver experience. We are in the process of analyzing the data and preparing a medical journal manuscript that will be submitted in the summer of 2026.