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IN THIS ISSUE


Moving as one
HAE IN-MOTION® is Back! Pre-Register Today to Receive your FREE Swag Bag!

Move as ONE and join TEAM HAEA for the 2026 HAE IN-MOTION® Virtual Event. Grab your friends, family, or your pets, and start raising awareness for HAE.

Starting October 1st, you can track your activities that will unite the HAEA Community.

How it works:

1. Pre-register through the HAEA Member Portal: https://portal.haea.org/home#

By pre-registering, you will receive a FREE swag bag! Don’t miss out, pre-registration is open through September 30th!

2. Download the Charity Miles app (IOS or Android). The virtual event officially kicks off October 1st–31st, and this is how we’re counting steps, fundraising, and raising awareness for HAE together.

Every step you take brings us closer to our goal of 2 million community steps!

PRE-REGISTER HERE
You Asked. We Answered. Introducing HAEA Office Hours with an Expert!

Have a question about open enrollment, prior authorizations, or navigating the insurance process with HAE? We want to hear from you!

We’re kicking off HAEA Office Hours with an Expert with Troyce Venturella, the HAEA Director of Health & Research Services, who will tackle your questions about insurance and prior authorizations.

Submit your question here: https://www.haea.org/autoforms/f/480
Your question could be answered in our very first episode. Stay tuned in October!


Personalized Support
Personalized Support to Ease Your HAE Journey

Living with HAE can sometimes feel overwhelming. Whether you’re navigating a new diagnosis, dealing with insurance challenges, searching for an HAE specialist, or preparing for travel, you don’t have to do it alone. The HAEA Health Team is here to provide personalized support and guidance every step of the way.

Our Health Advocates are ready to help HAEA friends overcome barriers to care and provide individualized assistance based on their specific needs.

Our Health Team can help with:
  • Insurance navigation and understanding your coverage
  • Prior authorizations, appeals, and coverage denials
  • Finding HAE specialists and Angioedema Centers
  • Connecting with manufacturer support programs and financial assistance resources
  • Emergency care planning and travel preparation
  • Educational resources to help you better understand HAE and available treatment options
We’re excited to welcome Katie Bates to the HAEA Health Team! Adding Katie to our team expands the compassionate, individualized care that our community has come to expect from HAEA.

Whether your questions are simple or complex, our Health Team is here to help you navigate the challenges of living with HAE so you can focus on what matters most - your health and quality of life.

We’re here for you every step of the way. Contact the HAEA Health team by visiting haea.org or give us a phone call at (866) 798-5598.

Scholarships
Final Weeks to Apply for Spring 2027 HAEA Scholarships!

The HAEA helps students with a confirmed HAE diagnosis pursue their academic goals by reducing the financial burden associated with higher education.

The HAEA has two scholarships available to people with HAE: the Pam King HAEA Scholarship and the HAEA Scholarship for Aspiring Healthcare Professionals. To read more about the details of each scholarship, please visit https://www.haea.org/pages/p/scholarships.

Key Information:
  • Application Period: August 1, 2026 - September 30, 2026
  • Eligibility: Students with a documented HAE diagnosis
  • Membership Requirement: Scholarship applicants must be members of the US HAEA
If you have any questions about the Pam King HAEA Scholarship or the HAEA Scholarship for Aspiring Healthcare Professionals, please contact
scholarships@haea.org.
Apply for the HAEA Scholarships by clicking HERE!
Voices of the Next Generation: #BeyondHAE Youth Podcast with Kate and Noah

BeyondHAE
In this episode of the BeyondHAE Podcast, Noah is joined by his girlfriend, Kate, for an honest conversation about what it's like to navigate life with HAE together. Noah shares how becoming involved with the HAEA Youth Leadership Council helped him find confidence, purpose, and a passion for advocacy, while Kate offers her perspective on supporting a loved one with HAE and the importance of learning alongside him.

Noah and Kate also discuss why advocacy matters, from sharing personal stories to speaking up for better access to care. They reflect on how the HAEA has helped them grow over the years and emphasize that learning about HAE is an ongoing journey, for people with the condition and those who support them. They encourage listeners to get involved, find their voice, and discover the strength that comes from being part of the HAEA community.

Watch the podcast by clicking HERE!

Community Connections
Meet HAEA Friends: HAEA Community Connections is Coming to New Orleans!

The HAEA Community Connections events are all about good food, good conversation, and time spent with people who understand. There’s something special about gathering around the table in Louisiana.

That’s why we are inviting you and your family to a special Community Connections event held in the Greater New Orleans Area at Boulevard American Bistro (Metairie Location) on Saturday, October 3, 2026.

Join us for an afternoon of connection and conversation with fellow HAEA friends to share experiences and learn more about HAEA programs and resources.

Come hungry, bring your Louisiana spirit, and get ready to connect, share, and make new memories together.

We can’t wait to connect with our HAEA friends from across the Greater New Orleans area!

Register TODAY!
Dreaming Big Read This Month’s HAEA Community Blog
Dreaming Big with HAE: My Journey as an HAEA Scholarship Recipient

As an HAEA Scholarship recipient, college athlete, and engineering student, Michael is pursuing his goals while living with HAE. In his story, he shares how the HAEA Scholarship has supported his college journey and why he hopes to encourage other young people with HAE to keep pursuing their goals and doing what they love.

Read the full story HERE.
Interested in sharing your story? Please contact Carlie Hines at carlie@haea.org!
Join the Hive
Join the Hive: Participate in the ADVANCE HAE Scientific Registry!

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. Every contribution strengthens the hive!

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

Join the Scientific Registry HERE!
Health Awareness and HAEA CARE Groups (Community, Acceptance, Respect, Empathy)

Self-Care September: Caring for Yourself While Living with HAE

Living with HAE means balancing daily life with the unpredictability of a rare disease. This September, take time to focus on your own well-being. Self-care isn't selfish—it's an important part of managing your health.

Each small step can make a difference:
  • Prioritize restful sleep and listen to your body's signals.
  • Stay hydrated and nourish your body with healthy meals.
  • Make time for gentle movement when you're feeling well.
  • Practice stress management through mindfulness, deep breathing, or activities you enjoy.
  • Review your treatment plan and ensure your medications are up to date and readily available.
  • Connect with others through an HAEA CARE Group or your support network.
  • Celebrate the victories—big or small—that help you continue living life on your terms.
Remember, taking care of yourself helps you better manage HAE and enjoy the moments that matter most.

Upcoming HAEA CARE Groups
  • 1st Wednesday of the month at 7:30 PM EST / 4:30 PM PST
  • 2nd Thursday of the month at 11:00 AM EST / 8:00 AM PST
  • 3rd Tuesday 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.
Roundtable
HAE Speaks Podcast: Tony Has a Conversation with the Chief Executive Officer of Ionis Pharmaceuticals

In this new HAE Speaks Podcast series, Roundtable with the CEO, HAEA CEO & Chairman of the Board, Tony Castaldo, sits down with Brett Monia, Ph. D., the Chief Executive Officer at Ionis Pharmaceuticals.

Tony and Brett discuss Ionis’s mission, the company’s long-standing investment in the HAEA community, and the science behind RNA-targeted therapies for rare diseases like HAE. They also discuss DAWNZERA™, an approved treatment designed to help prevent HAE attacks, while sharing practical insights into treatment access, patient support programs, and the future of innovation and research within the HAE space.

Click HERE to watch the episode.
Note: This podcast is for educational purposes only and is not meant to provide medical advice. The HAEA is company- and product-neutral. We don’t endorse specific therapies and we don’t compare products. Treatment comparisons and selection are the sole responsibility of people with HAE and their physicians.
Clinical Trial icon Clinical Trial Updates

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 sometimes 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-knowledgeable 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.

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 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 open-label extension (OLE) study and continue receiving Navenibart to prevent HAE attacks at no cost.

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) protein 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.

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 join the CHAPTER-4 trial will receive the once-daily drug deucrictibant at no cost until it is approved for commercial use by the U.S. 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.

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 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.

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.

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.

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.

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.
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!
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.