Hereditary Angioedema Association - HAEA

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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.

10/13/2026

HAE Advocacy in Action: Your End-of-Year Legislative Update!

Watch here: https://open.spotify.com/episode/57k55NLT2Raoi8r3mU6B2j

HAEA Advocacy Director, Jess Myers, sits down with Dane Christiansen, the Managing Partner of the Health and Medicine Counsel of Washington, for a special end-of-year legislative update. Together, they discuss what has happened this year in healthcare policy, key issues impacting the HAEA community, and how you can support these HAEA Advocacy efforts.

10/12/2026

For six generations, HAE has been part of Scott’s family story, a journey marked by devastating loss, resilience, and life-changing progress. Scott reflects on his family’s experience with HAE, his role in the early days of the HAEA, and how advances in treatment and the strength of the HAEA community have transformed what living with HAE looks like for his grandsons today. 👏

Read this month’s community blog HERE: https://www.haea.org/pages/bp/blog51_ScottM

10/10/2026

Preparing a transition to Medicare? Tune in to the latest HAE Speaks Podcast for helpful insights from the HAEA Health Team🎙️

➡️ Listen HERE: https://open.spotify.com/episode/1lX7DTca3EH49w2K43HgjY

In this episode, two compassionate advocates for the health and wellbeing of our community, Troyce Venturella, HAEA Director of Health & Research Services, and Mandy Granat, HAEA Health Services Manager, discuss what individuals living with HAE should consider when transitioning to Medicare.

The conversation explores enrollment timelines, Medicare plan options, medication coverage, financial assistance, and resources available to help individuals research their options and plan ahead.

For more information, or additional support, please contact [email protected].

10/09/2026

🥇🏃If you haven’t yet already registered for the 2026 HAE IN-MOTION®, there is still time!

Register before Friday, October 16th, to be entered into a raffle to receive a FREE HAEA Swag goodie bag! The winner will be notified via email.

➡️Register through our HAEA Member Portal to receive your swag bag: https://portal.haea.org/home #

Help us reach 2 million steps by the end of October!

10/08/2026

Do you love someone with HAE? ❤️

Show your support with something special from the HAEA Shop! With the holidays right around the corner, customizable HAEA gear makes a meaningful gift for someone in the HAEA community.

Shop HAEA gear today: https://www.haea.org/pages/p/haea_gear

10/07/2026

How rare is Hereditary Angioedema (HAE)?

In September of 2025, a top rated peer-reviewed medical journal published the HAEA’s landmark study that determined, for the first time, how many people in the U.S. are living with HAE—across all known types. The often-quoted figure of 1 in 50,000 comes from older European studies and only reflects HAE caused by C1 inhibitor deficiency.

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. The new, much larger HAE population statistic puts us in a much stronger position to protect what matters most to people with HAE and their families.

Read the full study here: https://www.annallergy.org/article/S1081-1206(25)00258-3/fulltext

10/06/2026

❓Question of the Month: If my local hospital has HAE treatment available, should I still carry my prescribed on-demand treatment with me?

Being prepared for an attack is a crucial part of living with HAE. Even if your local hospital has HAE treatment available, it is important to always carry your prescribed on-demand treatment with you. Talk with your HAE-treating physician about your individual treatment plan, including when, and how, to use your medication.

It can also be helpful to connect with your local hospital ahead of time. Sharing information about HAE and your treatment plan can help the care team better understand your needs if you need emergency care.

Have questions or need more information? Contact an HAEA Health Advocate at [email protected] or (866) 798-5598.

10/05/2026

📣 🔴 We invite you to watch the on-demand HAEA Treatment Education Series webinar: Gene Editing Exploration

In this educational webinar, Dr. John Anderson explores the science behind gene editing, an approach being researched as a potential treatment for certain genetic conditions. This session provides valuable insights into how gene editing is intended to work, and answers some frequently asked questions about CRISPR gene editing.

10/03/2026

There’s nothing like community in Louisiana! ⚜️

HAEA community members gathered just outside New Orleans at Boulevard American Bistro for a New Orleans-inspired lunch and an afternoon of connection.

It was a special opportunity for people and families affected by HAE to meet others in the area, connect with members of the HAEA, and spend time with people who understand life with HAE.

Thank you to everyone who joined us for the HAEA Community Connections event in Louisiana!

10/02/2026

Hereditary Angioedema (HAE) can cause sudden and severe swelling in different areas of the body, including the hands, feet, face, abdomen, and airway.

For people living with HAE, attacks can be painful, unpredictable, and, when the airway is affected, life-threatening.

Understanding what HAE can look like is an important part of raising awareness and helping more people recognize this rare disease.

🔗 Learn more about HAE here: https://youtu.be/YTe-bymD4eY?si=pRKTikFLZjgkY7gG

Address

10560 Main Street, Suite PS40
Fairfax, VA
22030

Telephone

+18667985598

Website

http://www.haea.org/

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