#Families4HAE: Empowering the Next Generation of HAE Advocates

Families give children the courage to face Hereditary Angioedema (HAE) each day — and our #Families4HAE community builds on that strength by ensuring every child feels connected, supported, and empowered.

Your donation to the #Families4HAE End-of-Year Fundraiser helps us continue creating meaningful opportunities for children and families affected by HAE where kids can learn, grow, and build lifelong friendships.

Every dollar makes a difference:
$25 provides a child with an HAEA Cares Kit, reminding them they’re not alone.
$100 funds materials for a youth advocacy workshop.
$500 helps a family travel to a national youth event.
$1,000+ sponsors a family’s full Camp Brady experience at The Painted Turtle.

Together, we can make sure no child with HAE grows up feeling alone, and every family feels part of a strong, caring community.

Make your tax-deductible donation today at haea.org and help us build a brighter future for HAEA families everywhere.

Make a Gift to the HAEA Today!

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Be Prepared to Choose an Optimal Insurance Plan: Open Enrollment Season Is Upon Us!

Now is the time to review your current insurance plan to ensure it continues to meet your healthcare needs, including coverage for your HAE medications.

Key Open Enrollment dates:

• Employer-Based Insurance: Check with your HR (Human Resources Department)


• ACA (Affordable Care Act): November 1st - December 15th, with coverage beginning on January 1st, 2026.

For more information or assistance, please contact an HAE Health Advocate at (866) 798-5598

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New Resource for Young Adults: Insurance Frequently Asked Questions

Are you turning 26 soon, starting a new job, or trying to figure out health insurance on your own? We know navigating insurance can be confusing, especially while managing HAE. That’s why youth leader, Isabelle B., worked with the US HAEA to create the Young Adult Insurance FAQ – a helpful guide to answer common questions about coverage options, enrollment, and making sure you have access to your HAE treatments.

If you’re aging out of a parent’s plan, exploring the marketplace, or choosing between employer options, this resource can be used to support you every step of the way.

Check out the new Young Adult Insurance FAQ here:Young Adult Insurance FAQ

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What’s next for Hereditary Angioedema - What You Need to Know

Speaker: Marc Riedl, MD, MS

This episode re-visits the HAEA National Summit session from HAE Expert and US HAEA Medical Advisory Board Member, Dr. Marc Riedl, as he offers a crucial look at the future of HAE care. The discussion focuses on the rapidly advancing treatment landscape, covering the latest novel therapies in development, and how these advances aim to improve treatment efficacy, convenience, and quality of life for the HAE community.

Navigating insurance can be challenging, but you don’t have to do it alone!

Listen to the episode by clicking HERE!

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Create a True Partnership with your Physician To Better Manage Your HAE

We personally invite you to use an exciting (and free!) resource to prepare for your next HAE appointment: The HAEA Shared Decision Making Tool (HAEA SDM).

By answering a series of questions, HAEA SDM summarizes your:

• Recent experience with HAE,
• Current treatments, and
• Preferences and what matters most to you when considering an HAE treatment.

This information is compiled into a downloadable one-page summary overview that serves as a basis for a more collaborative treatment-oriented discussion with your HAE physician.

HAEA SDM will help you and your doctor create a treatment plan that truly fits you.

Access the HAEA SDM Tool HERE!
If you have any questions, need assistance using the tool, or would like to share feedback, please contact the HAEA Health Team at health@haea.org.

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

Staying Well During a Busy Season
The holiday season is often called the most wonderful time of the year — but it can also be one of the busiest and most stressful. Taking time to focus on your health can help you enjoy the season more fully and stay proactive in managing your HAE health and wellness.

Stay Ahead With Your Healthcare Planning
The end of the year is a great time to follow up with your physician, insurance company, specialty pharmacy, and manufacturer. Making sure your information is current can help prevent delays with prior authorizations and prescription renewals as we head into the new calendar year.

Medication Shipments & Holiday Delays
The winter months and holiday rush can affect shipping timelines. Please remember to order your medication early to ensure you stay on track with your treatment schedule.

Connect With the Community
This time of year can also affect how you feel emotionally. If you’re unable to spend time in-person with family or friends — or if you simply want a place to connect — consider joining one of the HAEA CARE Groups. These groups offer a welcoming space to connect with others in the HAEA community, share experiences, and learn helpful tips for managing your health throughout the season.

Upcoming HAEA CARE Groups

• Wednesday Evening at 7:30 PM ET / 4:30 PM PT
• Thursday Morning at 11:00 AM ET / 8:00 AM PT
• Tuesday Evening at 10:00 PM ET / 7:00 PM PT

Interested in joining one of these monthly groups? Contact the HAEA Health Team for more information by calling 866-798-5598 or emailing an advocate at health@haea.org.

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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 Federal 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 reach out to the HAEA Research Team at research@haea.org.

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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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The CHAPTER-3 Trial

The US HAEA is currently assisting Pharvaris in recruiting people for the CHAPTER-3 trial, a Phase 3 worldwide clinical research study to investigate the safety and effectiveness of an investigational once-daily oral drug (deucrictibant) 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 CHAPTER-3 trial if you are diagnosed with HAE Type I or II and are 12 years of age or older, and have access, ability, and experience using standard-of-care on‑demand HAE treatment to manage HAE attack. After completing the CHAPTER-3 Study, participants may be eligible to join the open-label extension (OLE) study, and continue receiving deucrictibant to prevent HAE attacks at no cost.

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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 Federal 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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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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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.

If you have HAE Type I, Type II, or HAE with Normal C1-Inhibitor and are interested in learning about new clinical studies to prevent attacks, please contact an HAE advocate at 866-798-5598 to see if there will be an active clinical trial site in your area.

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Social Media Snapshots

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Update your HAEA membership information HERE!

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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 © (2025) 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.