Apply Today to Attend the 2026 HAEi Regional Conference Americas!

HAE International (HAEi) is hosting the Regional Conference Americas in Ottawa, Canada from October 23-25, 2026. We are looking forward to seeing many US HAEA Friends in Ottawa! HAEi is offering travel grants covering flights and lodging. However, a limited number of grants are available and will be awarded through a lottery process.

The event provides participants with a fun, HAE focused environment that enables sharing knowledge, experience, and advocacy strategies aimed at broadening access to and reimbursement for modern HAE treatments.

People with HAE, caregivers, youngsters, and HAE physicians/scientists with a valid US passport are welcome to apply for a travel grant at travelgrant.haei.org.

Don’t wait! Travel grant applications close at 12:00 CET on April 13, 2026.

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hae day :-) 2026 Theme: Awareness Through Education

Every year on May 16th, the global HAE community comes together for hae day :-), a day dedicated to education, awareness, and showcasing the strength of our community. It is a time to connect, reflect, and stand united in support of people and families affected by HAE.

In the coming weeks, the US HAEA will share two exciting educational videos that we produced that makes HAE easier to understand for people of all ages.

This hae day :-) , we ask you to give back to the HAE community by sharing these videos with the people in your life:

• Friends and family
• Teachers, coaches, and school staff
• Coworkers and group chats, and
• Your social media community.

Tag @us_haea on Instagram or Hereditary Angioedema Association - HAEA on Facebook to help us celebrate and amplify your awareness efforts.

Send an email. Share a post. Text a link. Start a conversation.

Learn more and make a charitable donation by visiting haea.org.

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Watch the Mental Health and HAE Treatment Education Series Webinar

• Topic: Mental Health and HAE
• Guest Speakers: Priya Bansal, MD, Melissa (Individual with HAE), and Alexandra Hansel (Product Manager, HAE Franchise Marketing)
• Sponsored by: CSL

Join HAE specialist, Dr. Priya Bansal, and Melissa, an individual with HAE, as they discuss the emotional and mental health challenges associated with HAE. They share personal and clinical perspectives, along with practical guidance on how patients can communicate with healthcare providers and access support.

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

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Read the HAE Community Blog: Pursuing an Active Career With HAE

This HAEA Community blog highlights Sonia and her journey of growing up with HAE while overcoming limitations to pursue a physically demanding career of horseback riding. Despite early restrictions and constant caution, she highlights how access to a treatment that fit her needs opened the door to new opportunities, allowing her to follow a lifelong passion for horseback riding. Now working full-time in the horse training industry, she reflects on how advancements in HAE care have made it possible to live an active, fulfilling life and achieve dreams once thought out of reach.

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

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

April is Stress Awareness Month

Managing stress is an important part of living well with HAE. While HAE attacks can have many causes, stress is a commonly reported trigger that may influence when attacks occur.

Living with an unpredictable condition can create a cycle where stress and symptoms affect each other. Recognizing early signs—like fatigue, irritability, or trouble sleeping—can help you take action sooner.

Simple strategies can make a meaningful difference:

• Maintain a consistent daily routine
• Practice relaxation techniques like deep breathing or mindfulness
• Stay active with gentle movement
• Prioritize good sleep
• Stay connected with supportive people – Join one of the monthly CARE Groups

Having an HAE action plan—knowing your triggers, keeping medication accessible, and preparing for emergencies—can also reduce anxiety and increase confidence.

This month, take time to care for your mental well-being. Managing stress is not just helpful—it’s part of managing HAE.

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

The HAEA Health team is here for you. 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 means 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 have a more active role in your health care.

Following is a list of clinical trials currently underway. If you are interested in receiving more information on clinical trials, or are interested 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 people 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, but there is a higher chance of receiving the study drug versus 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 trial, 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, that interferes with the production of the plasma kallikrein (PKK) gene, 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 taking 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. As an OLE study, anyone who joins 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. 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 that can help advance treatment options for the broader HAE community.

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 will require dedicated on-site visits. Some visits may be completed virtually over the phone or by video conference.

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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 drug versus 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 and 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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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 via electronic recording attacks in an 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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STOP-HAE Trial

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

The STOP-HAE trial is a Phase 3 study evaluating a new treatment called 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 where two out of three individuals will receive the study drug. Participants will receive two injections of ADX-324 or 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. The study is seeking participants who are 18 years or older, diagnosed with HAE Type I or Type II, and willing to stop taking their current preventive medication.

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CSL313_4002 Trial

The US HAEA is currently assisting CSL Behring with recruitment for the CSL313_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.

As an open-label study, all participants will receive free garadacimab, which includes a starting dose of garadacimab, followed by once-monthly subcutaneous injections for two months. There is no washout period required for this trial 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.

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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Social Media Snapshots

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.