Hereditary Angioedema Association - HAEA

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Hereditary Angioedema Association - HAEA

The US HAEA is a non-profit advocacy and research organization serving people with HAE.

To lead a nationwide advocacy movement that focuses on increasing HAE awareness and education, empowering access to suitable treatment, and fostering ground-breaking research that includes searching for a cure.

08/22/2026

🐝 Have you heard the buzz?

The ADVANCE HAE Scientific Registry has new forms designed to capture even more insights about the HAE experience.

Whether you're joining for the first time or updating your information, every contribution helps researchers better understand HAE and support future discoveries.

Join the Hive. Advance HAE!

🔗Join or update your information here: https://www.haea.org/pages/p/scientific_registry_join

08/21/2026

Did you miss the HAEA in Action August 2026 Newsletter? 📬

Stay up to date with the latest from the HAEA, including community news, advocacy updates, educational resources, inspiring stories, podcasts, webinars, youth programs, and more.

Check it out here: https://www.haea.org/pages/p/newsletter_aug_2026

08/20/2026

🎙️ We invite you to watch a special episode of the HAE Speaks Podcast! Roundtable with the CEO - Tony Has a Conversation with a CSL Executive Director.

In this new HAE Speaks Podcast series, Tony (HAEA CEO & Chairman of the Board) sits down with Tom Groeling, Executive Director of Specialty Franchise at CSL.

Together, they discuss CSL's long-standing commitment to the HAE community and the company's vision for advancing care. The conversation also explores CSL's HAE therapies, ANDEMBRY® and HAEGARDA®, and provides an overview of their intended use, key features, and available support programs.

08/19/2026

🎙️In this month's episode of the HAE Speaks Podcast, the Warner-Mukes family shares their journey of living with HAE together.

➡️Watch or listen now by clicking HERE: https://open.spotify.com/episode/5WCIA8yOCw5LA3CaIWYkHJ?si=uuKt8p1dSfS_EnCwruxTOQ

From navigating diagnosis and treatment to supporting one another through the challenges of daily life, they offer an honest conversation about what it means to face HAE as a family.

08/17/2026

On National Nonprofit Day, we reflect on the HAEA's journey over the last 26 years!

From a small group of advocates during one of our earliest Hill Days, to more than 250 passionate voices united in Washington this year, our mission has remained the same: to improve the lives of people living with Hereditary Angioedema (HAE).

These two photos are a reminder of what's possible when a community comes together with a shared purpose. Thank you to every advocate, volunteer, healthcare professional, and supporter who has played a role in our journey and continued to move our mission forward.

08/14/2026

August is National Wellness Month! 😊

Did you know that the HAEA offers Virtual Support Groups called CARE Groups available for people living with Hereditary Angioedema (HAE) and their caregivers?

For people living with HAE, stress can be more than just exhausting, it can actually trigger an attack. That’s why making time for rest, mindfulness, and self-care is essential.

The HAEA CARE Groups are held virtually three times a month through Zoom. You can find the regularly scheduled times below:
-The first Wednesday of the month at 7:30 PM EST / 4:30 PM PST,
-The second Thursday of the month at 11:00 AM EST / 8:00 AM PST,
-And the third Tuesday of the month at 10:00 PM EST / 7:00 PM PST.

Interested in joining one of these monthly groups? Contact an HAEA Health Advocate for more information by calling 866-798-5598 or emailing an advocate at [email protected].

08/13/2026

Hereditary Angioedema, or HAE, is a very rare and potentially life-threatening genetic condition that involves recurrent attacks of severe swelling (angioedema) in various parts of the body, including the face.

When untreated, an HAE attack often lasts for three days, sometimes even longer. Today, thanks to advances in HAE treatments and the strength of our community, more people with HAE are able to manage their disease.

Learn more about HAE by watching our Kid-Friendly Guide: https://youtu.be/dPEKOx_FSH8

08/12/2026

Did you miss the latest ?🎙️

In this episode, we met Nick and Dylan, two new members of the HAEA Youth Leadership Council (YLC).

Tune in as they share their personal journeys to diagnosis and what it means to become part of a community of people who truly understand life with HAE.

👉 Watch on Spotify HERE: https://bit.ly/4fBsVrj

08/11/2026

The HAEA is proud to support students as they pursue their educational goals.
If you’re a US HAEA member with a confirmed HAE diagnosis, you may be eligible for financial support through the Spring 2027 HAEA Scholarships.

📅 Apply by September 30, 2026

👉 Learn more: https://www.haea.org/pages/p/scholarships

08/10/2026

Do you know a young person making a difference in the HAEA community? 💙

Nominate them for the HAEA Youth Advocacy Achievement League!

Nominations close September 10th!

Submit using the link HERE: https://www.haea.org/autoforms/f/477

Address

10560 Main Street, Suite PS40
Fairfax, VA
22030

Telephone

+18667985598

Website

http://www.haea.org/

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