Have a Child with HAE? Share this Kid-Friendly Educational Video

There is a BRAND NEW HAEA-produced educational video created especially for kids and teens in the HAEA community!

Watch, learn, and share: https://youtu.be/dPEKOx_FSH8

Featuring familiar HAE “characters” like C1-Inhibitor and Bradykinin, this video breaks down what’s happening in the body in a way that’s engaging and easy to understand.

Kids can help raise HAE awareness by sharing the video with a teacher, coach, or classmate and on their social media channels.

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Join the Hive: Support HAE Research

Just like every bee plays a role in the hive, every member of the HAE community can help advance research. The ADVANCE HAE Scientific Registry brings together patient experiences to help researchers better understand HAE, improve care, and support future treatment developments.

Whether you're new to the registry or already participating, your involvement matters. New participants are encouraged to join the registry, while current members are asked to log in and update their information. We’ve recently added brand new forms that will help capture even more valuable insights about the HAE experience, making your participation more important than ever.

By sharing your experiences, symptoms, and treatment journey, you're helping build a stronger foundation for HAE research and ensuring the patient's voice remains at the center of future discoveries.

Join the registry or update your information today. Every contribution strengthens the hive.

https://www.haea.org/pages/p/scientific_registry_join

For more information or any questions you have, please contact Sherry Swanson at sherryswanson@haea.org.

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Building Connections Across the HAEA Community

Our 2026 in-person Community Connection Events held across the country provide a welcoming space for HAEA friends to share experiences, build friendships, learn from one another, and strengthen the bonds that make our community so special.

So far this year, HAEA members came together in Nashville, San Diego, and Phoenix. Each event offered longtime members the chance to reconnect and first-time attendees opportunities to meet others in our community.

The excitement continues this weekend as we head to Hershey, Pennsylvania, for our next Community Connections event. We look forward to seeing our local HAEA community there!

Find upcoming HAEA events in your area HERE!

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Can’t Attend an In-Person Event or One Isn’t Being Held in Your Area? Join the HAEA Virtual Meet and Greet

Join us for the 2026 Virtual HAEA Meet & Greet for a fun and exciting opportunity to connect with HAEA staff and fellow community members, learn more about HAEA services, and discover ways to make the most of your HAE journey.

This interactive virtual event will feature HAEA community member Carol G., who will share her personal HAE journey and the meaningful impact of community connection. Whether you're newly connected to the HAEA or have been part of the community for years, this event is a great opportunity to engage with others, ask questions, and learn more about the support available to you and your family.

Event Details

Date: Thursday, June 25, 2026
Time: 7:00 PM ET / 4:00 PM PT
Location: Virtual Event

Reserve your spot today! We look forward to welcoming you, helping you stay informed, and connecting you with the HAEA community.

Register today HERE!

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Read this Month’s HAEA Community Blog: A Father’s Day Reflection – Testing My Son for HAE

For Jake C., Father's Day carries a special meaning. Having grown up with HAE and lost his own father to the disease at a young age, Jake faced one of the most emotional moments of his life when it came time to test his son for HAE.

In this heartfelt reflection, Jake shares his family's HAE journey. He explains the uncertainty and fear of potentially passing the condition to the next generation, and the immense relief and gratitude he felt knowing he was supported by a strong, compassionate HAEA community every step of the way.

Read more about it HERE!
Interested in sharing your story? Please contact Carlie Hines at carlie@haea.org!

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We invite you to watch the on-demand HAEA Treatment Education Series Webinar!

• Topic:Mapping HAE Treatment: Current Routes and the Road Ahead
• Guest Speakers: Aleena Banerji, MD
• Sponsored by: Intellia

In this educational webinar, Dr. Aleena Banerji explores the current landscape of HAE treatment options, including existing administration routes and emerging advancements that may shape the future of care. This session provides valuable insights into evolving therapies and considerations for individuals living with HAE.

You can access the fully on-demand webinar by clicking HERE!

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HAE Speaks Podcast: Summer Safety Tips with the HAEA Health Team

Join HAEA Director of Health & Research Services, Troyce Venturella, and HAEA Health Services Manager, Mandy Granat, as they discuss important summer safety considerations for individuals and families living with HAE.

The conversation is designed to help the HAEA community stay safe, healthy, and prepared while enjoying summer activities with family and friends!

Watch the podcast by clicking HERE!

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Health Awareness and HAEA CARE Groups (Community, Acceptance, Respect, Empathy)

The HAEA Health Team is always here for you. Take a break from the busy season and join one of our CARE groups.opportunity to support each other, not just on hae day :-), but throughout the year.

Upcoming HAEA CARE Groups

• 1st Wednesday Evening of the month at 7:30 PM EST / 4:30 PM PST
• 2nd Thursday Morning of the month at 11:00 AM EST / 8:00 AM PST
• 3rd Tuesday Evening of the month at 10:00 PM EST / 7:00 PM PST

Contact us at health@haea.org or 866-798-5598.

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What is a Clinical Trial?
Clinical trials are research studies conducted to evaluate whether a medicine to treat HAE is safe and effective in humans. Clinical trials are a critical part of drug development and are required before a treatment can be approved by the Food and Drug Administration (FDA) and become available by prescription.

What are the benefits of participating in a Clinical Trial?
Clinical trials can offer an open-label extension, which provides free access to HAE medicines being studied until they are approved and commercially available. Participation in a clinical trial also provides regular touchpoints with an HAE physician throughout the trial period and allows you to take a more active role in your health care.

The following is a list of clinical trials currently underway. If you are interested in receiving more information about clinical trials or in participating in any of the trials listed below, please fill out the Clinical Trial Interest Form..

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ALPHA-ORBIT Trial

The US HAEA is currently assisting Astria Therapeutics in recruiting participants for the ALPHA-ORBIT trial, a Phase 3 worldwide clinical research study to investigate the safety and effectiveness of an investigational subcutaneous injection (Navenibart) given every 3 or 6 months to prevent Hereditary Angioedema (HAE) attacks.

This is a placebo-controlled study, with a higher chance of receiving the study drug than the placebo. The use of an approved on-demand medication to treat acute attacks is permitted.

You may qualify for the ALPHA-ORBIT trial if you are diagnosed with HAE Type I or II and are 12 years of age or older. After completing the ALPHA-ORBIT trial, participants may be eligible to join the long-term extension study and continue receiving Navenibart to prevent HAE attacks at no cost.

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BW-20805-2001 Trial

The US HAEA is currently assisting Argo Pharmaceuticals in recruiting people with HAE for the BW-20805-2001 study.

The BW-20805-2001 trial is a Phase 2 study evaluating a new treatment, siRNA, which interferes with the production of the plasma kallikrein (PKK) gene and is intended for long acting prevention of HAE attacks. BW-20805-2001 is delivered subcutaneously once every 3 or 6 months.

This is not a placebo controlled trial. Participants will be assigned one of three dosing schedules for the study drug. Following completion of the study, participants will be offered the opportunity to continue treatment with BW-20805-2001 through an open label extension (OLE) study.

You may qualify for the BW-20805-2001 study if you are between 18 and 70 years old and diagnosed with HAE Type I or II.

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CHAPTER-4 Open Label Extension Trial

The US HAEA is currently assisting Pharvaris in recruiting for CHAPTER-4, the open-label extension (OLE) study for the CHAPTER-3 trial.

All participants who joined the CHAPTER-4 trial will receive the once-daily drug deucrictibant at no cost until it is approved for commercial use by the Food and Drug Administration (FDA). The benefits of enrolling in an OLE study include having continued access to treatment, receiving an investigational drug that has shown promise in a previous trial under close medical supervision, and contributing valuable data to advance HAE treatment options.

Participants must be diagnosed with HAE, be 12 years of age or older, and have access to standard-of-care on-demand treatment to manage any HAE attacks that may occur. The CHAPTER-4 study will last 2.5 years and require dedicated on-site visits, though some may be completed virtually.

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CREAATE Trial

The US HAEA is currently assisting Pharvaris in recruiting people for the CREAATE trial, a Phase 3 worldwide clinical research study to investigate the safety and effectiveness of an investigational once-daily oral drug (deucrictibant) to prevent Acquired Angioedema (AAE) attacks.

This is a placebo-controlled study, with equal chances of receiving the study drug or a placebo. The use of an approved on-demand medication to treat acute attacks is permitted.

You may qualify for the CREAATE trial if you are diagnosed with AAE, are 18 years of age or older, and have access, ability, and experience using standard-of-care on‑demand HAE treatment to manage AAE attacks. After completing the CREAATE Study, participants may be eligible to join the open-label extension (OLE) study and continue receiving deucrictibant to prevent AAE attacks at no cost.

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CSL312_4002 Trial

The US HAEA is currently assisting CSL Behring with recruitment for the CSL312_4002 study, a Phase 4 open-label clinical trial evaluating the subcutaneous injection garadacimab (formerly known as CSL312, brand name, Andembry) for HAE attack prevention.

This study is open to people with HAE who are:

• 12 years of age and older,
• Currently using a long-term prophylactic therapy, and
• Interested in switching to garadacimab.

All participants will receive garadacimab at no cost, starting with an initial loading dose followed by monthly subcutaneous injections for two months. No washout period is required as the dosing schedule is determined by the previous preventive therapy’s schedule.

The study will evaluate safety after switching therapies. Use of on-demand medication for acute attacks is permitted.

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GREAT Study

The US HAEA is currently assisting CSL Behring with recruitment for the Garadacimab Real-World Treatment Outcomes of Effectiveness, Safety, and Quality-of-Life in People with HAE (GREAT Study).

The GREAT study is an observational study for individuals 12 years of age or older who have started garadacimab and are willing to provide data over a 48-month period by recording attacks in an electronic HAE eDiary.

Enrollment in this study is contingent upon the participant having a prescription for the monthly use of garadacimab. No medication is provided by the sponsor.

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OASISjunior Trial

The US HAEA is partnering with Ionis Pharmaceuticals to enroll children and adolescents in the OASISjunior study, a Phase 3 clinical trial evaluating donidalorsen as an investigational therapy for HAE in children.

Donidalorsen works by reducing prekallikrein (PKK), a protein in the body that can trigger HAE attacks.

This study is open to children and adolescents with HAE who are ages 2 to less than 12 years old, diagnosed with HAE Type I or II, and are either new to treatment or already on long-term prophylaxis for HAE.

All participants will receive donidalorsen at no cost for the 18-month duration of the study, and will be required to visit the study clinic for scheduled assessments.

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STOP-HAE Trial

The US HAEA is currently assisting ADARx Pharmaceuticals in recruiting people with HAE for the STOP-HAE study.

This Phase 3 study is evaluating a new treatment ADX-324. This potential therapy employs Small Interfering RNA (siRNA) technology, which is a molecular tool that, in effect, tells cells to “stop making this specific protein”. ADX-324, which is designed to be a long lasting subcutaneous preventative therapy, targets plasma kallikrein, a key protein in the biochemical process that ultimately causes an HAE attack.

This is a placebo-controlled trial in which two out of three participants will receive the study drug. Participants will receive two injections of ADX-324 or a placebo over the course of eight months. Following completion of the study, participants will be offered the opportunity to continue taking ADX-324 through an open label extension study.

Eligible participants must be 18 years or older, diagnosed with HAE Type I or Type II, and willing to stop taking their current preventive medication.

If you have HAE Type I, Type II, HAE with Normal C1-Inhibitor, or AAE and are interested in learning about new clinical studies to prevent attacks, please fill out the Clinical Trial Interest Form to see if there is an active clinical trial site in your area.

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Update Your HAEA Membership!

Now is the perfect time to make sure we have your most up-to-date information so you never miss important updates on:

• HAE therapies & Clinical Trials,
• Community Events,
• Educational Resources,
• Legislative & Advocacy Updates,
• Important Community Announcements, and more!

It only takes a minute to refresh your details, and it helps us stay connected and continue supporting you throughout 2026!

If you have questions or need assistance, please reach out to us at updates@haea.org or 866-798-5598.

Update your HAEA membership HERE!

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Don’t miss the latest HAEA news and announcements, connect with us on social media!

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The HAEA is an advocacy and research organization committed to actively engaging our community in a wide variety of grassroots activities that promote HAE education and awareness. We provide personalized services to address the unique needs of people with HAE and their families, which includes helping them secure access to and reimbursement for modern HAE medicines. Our great success in supporting clinical research has resulted in a variety of FDA-approved therapeutic options. We work closely with expert physicians to continuously upgrade our community’s quality of life through improving diagnosis and knowledge of the condition, and encourage an individualized approach to selecting an optimal treatment. The HAEA is product and company neutral and continues to enthusiastically support drug discovery research aimed at the next generation of HAE therapies. Copyright © (2026) US Hereditary Angioedema Association All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form by any means, mechanical, electronic, photocopying, recording, or otherwise without the prior written permission of the US Hereditary Angioedema Association. For information, send an email to info@haea.org.