From Jess Meyers, Communications and Advocacy Manager, US HAEA
US HAEA Publishes First-Ever Study Showing the Number of People Diagnosed with HAE in the United States
The HAEA designed this research project to provide a credible estimate of how many people in the US have been diagnosed with HAE. The often-quoted figure of 1 in 50,000 comes from older European studies and only reflects HAE caused by C1 inhibitor deficiency. Our new analysis offers a broader, U.S.-based estimate that includes all forms of diagnosed HAE—addressing a long-standing gap in understanding the true prevalence of the condition.
Recently published in a top rated peer-reviewed medical journal, this landmark study featured collaboration with leading HAE experts and specialists in data mining and demographic analysis.
Our goal was to determine, for the first time, how many people in the U.S. are living with HAE—across all known types. To do this, we had to work around a key challenge: there’s no dedicated diagnosis code for HAE in the U.S. billing system. So we developed and validated a unique model that combined a variety of data sources, including insurance claims for HAE-specific medications. Expert HAE physicians then reviewed anonymized records to confirm whether those cases truly reflected HAE.
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.
Getting this study published in a respected medical journal is a major milestone for the HAEA community. It gives us real numbers to back up what we’ve long known—that HAE affects more people than older estimates suggested. With this solid, U.S.-based data, we can show we are a bigger force than anyone previously thought. And that puts us in a much stronger position to protect what matters most to people with HAE and their families.
You can read the full study in the Annals of Allergy, Asthma, and Immunology here!
US HAEA Celebrates an Unforgettable 2025 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 partners, came together for an unforgettable weekend of education, empowerment, and connection.
See the article in this edition of Global Perspectives for a detailed overview of this exciting event.
HAEA Community Blog
The HAEA community blog features personal narratives detailing the daily struggles of managing HAE and stories of resilience and advocacy. The HAEA Community blog has empowered people with HAE, their caregivers, and other HAE advocates to navigate their HAE journey with confidence.
Below are excerpts from some recent Community Blog:
Ally B: My Experience at the HAEi Leap Program
“This experience gave me more than advocacy skills. It gave me lifelong friendships with incredible people from across the globe. Some were patients, others were caregivers, but all of us shared a common drive to make a difference in the HAE community”.
Ohm S: From Mystery to Diagnosis: A Decade of Resilience in the Face of Hereditary Angioedema
“Despite these difficulties, I’m confident that with more awareness, education, legislation, and advocacy surrounding HAE, there will be developments in this space in the near future. I’m dedicated to supporting others in the community affected by this disease, and I encourage everyone to contribute in their own way, regardless of their illness or condition.”
Zach N: From Tennessee to DC: Raising HAE Awareness on Capitol Hill
“Over these next few days, we honed in on specific and pertinent policies vital for the rare disease community, not just for HAE but for all thirty million Americans in the United States diagnosed with a rare illness. With that policy in hand and heart, we took to the Capitol, speaking with our representatives and political leaders and urging them to be leaders in making a better and healthier America.”
Explore the HAEA Community Blog and discover the heartwarming stories, invaluable insights, and empowering voices that unite us in the journey of living with HAE!