Hereditary Angioedema Association - HAEA

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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.

10/29/2026

💙 HAEA Resource Spotlight: The US HAEA Angioedema Center at UC San Diego

Did you know the US HAEA Angioedema Center at UC San Diego has been serving the HAEA Community since 2014?

🔗 Learn more about the Center and available resources:
https://www.haea.org/pages/p/angioedema_center

10/26/2026

Transitioning off a parent’s insurance plan can be a lot to navigate, especially while managing a rare condition like HAE. That’s why the HAEA put together this resource to help answer common questions and make the process a little easier. From understanding your coverage options to knowing what questions to ask, we’re here to support you every step of the way. 👏

Check out the full resource for young adults HERE: https://www.haea.org/pages/p/young_adult_insurance_faq

10/25/2026

🔬 HAEA Research in Action at the 2026 HAEi Regional Conference Americas!

On Friday, October 23, HAEA Research & Clinical Trials Manager, Karissa Bumann, presented preliminary findings from the HAEA/Adelphi Real World Longitudinal Baseline Survey at the 2026 HAEi Regional Conference Americas.

Thank you to the 483 HAEA friends who completed the baseline survey, a remarkable level of participation for a rare disease study. The baseline is the first of five questionnaires that will be administered over a 12-month period.

Your responses will offer a clearer picture of how HAE affects daily life over time and will help shape efforts to improve care, strengthen the case for insurance coverage of HAE medicines, and guide the development of future treatments.

Your participation makes it possible for the HAEA to carry out groundbreaking research that benefits everyone living with HAE. We look forward to reporting more findings from successive surveys as the study continues through early 2027.

HAEResearch

10/24/2026

🔬 HAEA Research in Action at the 2026 HAEi Regional Conference Americas!

On Friday, October 23, HAEA Executive Vice President of Health and Research, Christine Selva, presented findings from our landmark pediatric body mapping study at the 2026 HAEi Regional Conference Americas.

Through artwork, symbols, and personal stories, 19 young people ages 10–17 helped provide a deeper understanding of the physical and emotional impact of living with HAE.

This HAEA-initiated research elevates the important, yet often misunderstood, voices and experiences of young people with HAE.

10/23/2026

You Asked. We Answered! HAEA Office Hours with an Expert: Open Enrollment & Prior Authorizations

In our first episode of this brand new educational series, Troyce Venturella, the HAEA Director of Health & Research Services, answers questions directly from the HAEA community about Open Enrollment, prior authorizations, and navigating the insurance process with HAE.

Have a question you’d like answered in a future episode? Stay tuned for your next opportunity to ask an HAE Expert!

10/22/2026

Team HAEA Spotlight ⭐

“I love the HAE IN-MOTION® virtual event because it’s accessible. It’s the kind of event that allows anybody from anywhere to get involved in HAE advocacy!” -Kobe, YLC Member

Why do you participate in the HAE IN-MOTION® Virtual Event? Comment your “why” below!

Upload your photos through the Charity Miles app, or tag on social media!

10/21/2026

🎙From diagnosis to treatment, hear Nina share her personal experience living with HAE in this new episode of the HAE Speaks Podcast!

In this special Takeda-sponsored HAE Speaks podcast episode, Chaeli Wallace, Takeda’s Senior Manager for Patient Community and Education, speaks with Nina, a person living with HAE. Nina shares her personal journey from diagnosis to exploring treatment options, as well as the importance of community and support along the way.

10/21/2026

Caring for someone with HAE? This resource is for you!

The HAEA Caring for Caregivers Guide was created for parents, siblings, spouses, and loved ones who all play important roles in supporting someone living with HAE.

Don’t face HAE alone. Check out our Caring for Caregivers Guide HERE:https://haeaorg.s3.amazonaws.com/pdf_downloads/Resources-for-Caring+Caregivers.pdf

10/20/2026

Open Enrollment is here! Do you know what to look for when reviewing your health insurance options?

🎧 Tune in here HERE: https://open.spotify.com/episode/0u8a18Kq2CyMSwoc7LjzsI

In this special CSL-sponsored HAE Speaks podcast episode, learn about important factors to consider when choosing a health insurance plan, including medication coverage, prior authorizations, specialty pharmacies, out-of-pocket costs, provider networks, and questions you can ask before selecting your coverage.

10/19/2026

📣 🔴 We invite you to watch the on-demand HAEA Treatment Education Series webinar: Choosing for Today and Tomorrow With TAHKZYROⓇ

In this HAEA Treatment Education Series Webinar, Dr. Steve Dorman discusses long-term HAE prevention and the clinical evidence behind TAKHZYROⓇ. Bob, an individual living with HAE, also shares his personal journey and the role ongoing conversations with his healthcare provider have played in managing his HAE over time.

Address

10560 Main Street, Suite PS40
Fairfax, VA
22030

Telephone

+18667985598

Website

http://www.haea.org/

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