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IN THIS ISSUE


Shared Decision Making Tool
Create a True Partnership with your Physician To Better Manage your HAE

We 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.

scholarship
Are you planning to attend a college or university in the Spring of 2026? Applications for the Spring 2026 HAEA Are Now Open!

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, 2025 - September 30, 2025
  • 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.
IN-MOTION®
Track Your Steps While Raising HAE Awareness! Pre-Register today for the HAE IN-MOTION® - Step Up for HAE Event this October

The 2025 virtual HAE IN-MOTION® event, happening throughout October, provides an opportunity to engage in healthy activities and support the HAEA while raising HAE awareness within your neighborhood or community.

How it works:
  • Pre-register using the link here to receive your FREE swag bag! Pre-registration is open through September 30th! LINK: https://www.haea.org/autoforms/f/406
  • The virtual event officially kicks off October 1st–31st, we’re counting steps, fundraising, and raising awareness for HAE together. Every step you take brings us closer to our goal of 500,000 community steps!
Why It Matters

This challenge unites the HAE community, encourages movement, and spreads awareness in a powerful and personal way. You can participate individually or as part of a team. Invite friends, family, or coworkers to join you in making each step count.

Pre-registration is now open! All participants who register by September 30th will receive an exclusive HAE IN-MOTION® swag bag to help them get started.

Can’t participate? You can still support the challenge by donating or helping spread the word using #HAEinMotion on social media.

Camp Brady
Special Summer Camp for HAEA Kids Ages 6-13: Tune In to our Informative Q&A Webinar

Imagine a weekend where your family can relax, connect with others who understand HAE, and enjoy the outdoors, completely free of charge. Camp Brady at the Painted Turtle is for families with a child between 6 and 13 years old with a confirmed HAE diagnosis and will take place April 9–12, 2026.

From campfires and crafts to fishing and horseback rides, your weekend will be filled with mostly with fun and little bit of HAE education from HAE experts.

We invite your family to apply for one of 30 HAEA travel grants!

Travel grants will cover transportation, lodging, camp programming, and meals. Families will be selected by lottery, and we’ll maintain a waitlist should spots open up. We encourage all interested families to apply for a travel grant.

Are you interested in learning more?
Join us for an informative Q&A Session with HAEA Staff and The Painted Turtle team on September 16 at 4pm PT , 7PM ET
Register HERE!

About The Painted Turtle:
Nestled in California's beautiful Angeles National Forest, The Painted Turtle is part of Paul Newman’s SeriousFun network and offers medically supported, inclusive camp experiences where kids with serious illnesses can just be kids.

We hope you’ll take this opportunity to create lasting memories with your HAEA family.Youth Advocacy Month in October. Don’t miss this opportunity to shine a light on a young leader who’s making an impact!

Apply For A Travel Grant by clicking HERE!.

TrackR
Learn About the HAE TrackR App by Accessing the HAEA Academy

Managing HAE is a highly personal journey, and having the right tools can make a significant difference in your quality of life. Learn about the HAE TrackR app by accessing a special course that highlights benefits of using the HAE TrackR as part of your toolkit to help both you and your physician manage your HAE.

By the end of the course, you’ll feel confident incorporating this tool into your daily routine and discussing your progress with your healthcare team.

Take the HAE TrackR App by clicking HERE!
Access more HAEA Academy courses at academy.haea.org.
Newsletter icon Podcasts

PodcastSpeaks
Listen to the #BeyondHAE Podcast: Advocating for Yourself As You Transition into College

Youth Podcast series In this moving #BeyondHAE Podcast episode, HAEA Youth member Ally shares an exciting update on the newly revamped HAEA College Transition Guide, designed to support students with HAE who are moving away from home to attend college.

Ally is joined by fellow HAEA Youth Leader Paige for an honest and insightful conversation about their own college journeys. Together, they discuss the unique challenges of living in the dorms with HAE, from managing symptoms to balancing academic and social life. They share practical strategies they’ve used to navigate campus living, advocate for their needs, and stay healthy while embracing independence.

This episode offers valuable tips, relatable experiences, and reassurance that you’re not alone in this new chapter.

Tune in for empowering advice and a fresh perspective on making the most of your college experience while living with HAE!

Listen to the episode by clicking HERE!
Health Awareness and HAEA CARE Groups (Community, Acceptance, Respect, Empathy)

Open enrollment is just around the corner, and now is the perfect time to start preparing. Taking the time to research your plan options early can help reduce the stress of choosing coverage that works for you and ensures your HAE treatments are included.

To make the process easier, here are some important questions to ask as you explore your options

Key Questions to Ask When Reviewing Your Insurance Plan
  • Specialist Access: Is my HAE specialist in-network?
  • Medication Coverage: Are my HAE medications covered, and what will they cost?
  • Out-of-Pocket Costs: What is my maximum out-of-pocket expense for medications, services, and premiums?
  • Prior Authorizations: How often are prior authorizations required for HAE treatments (annually, every 6 months, or more frequently)?
  • Specialty Pharmacy: Does the plan require the use of a specific specialty pharmacy, and can I switch if another works better for me?
  • Emergency & Out-of-Network Care: What is the plan’s policy on out-of-network or emergency HAE care?
  • Quantity Limits: Are there monthly limits on how much medication I can receive?
  • Short-Term Prophylaxis: Does the plan cover preventive treatment before procedures such as surgery?
  • Support Services: What services are offered for chronic care management—does the plan provide an HAE-dedicated case manager?
  • Disputes & Appeals: How are insurance disputes or appeals handled, and what is the process if I need to appeal?

Choosing an insurance plan can sometimes feel stressful and overwhelming. Remember—you don’t have to navigate the process alone. Be sure to take advantage of the resources available to you, including the manufacturers’ patient support teams (HUB) and the HAEA Health Team, who are here to guide you through each step of the selection process.

In addition, HAEA CARE Groups provide a safe and supportive space to connect, share experiences, and find encouragement—whether you’re feeling stress from insurance decisions or other challenges in life

We hope you can join us for some great discussions during our monthly HAEA CARE Groups where HAEA friends share experiences and support each other. Please reach out to the health team at 866-798-5598 or health@haea.org. We are on this journey together.

The HAEA CARE Groups are held virtually three times a month through Zoom.

Upcoming HAEA CARE Group meeting times:
  • 1st Wednesday of the month - 7:30 PM ET / 4:30 PM PT
  • 2nd Thursday of the month - 11:00 AM ET / 8:00 AM PT
  • 3rd Tuesday of the month - 10:00 PM ET / 7:00 PM PT
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 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.

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.

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.

The CHAPTER-4 Trial

The US HAEA is assisting Pharvaris in recruiting people with HAE for CHAPTER-4, the Phase 3 open-label extension (OLE) study for the CHAPTER-3 study. CHAPTER-4 further investigates the safety and effectiveness of the investigational once-daily oral drug deucritibant to prevent HAE attacks. In the OLE study, all participants receive the investigational drug under close medical supervision for up to two and a half years. Additionally, trial participants contribute valuable data that can help advance treatment options for the broader HAE community.

You may qualify for the CHAPTER-4 trial if you are diagnosed with HAE, 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.

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.

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.
Join Us at an Upcoming HAEA Event
Youth
Saturday, September 28th at 12:00 PM - 3:00 PM CT

HAEA Birmingham Area Community Connections TopGolf Event
Saturday, September 28th at 12:00 PM - 3:00 PM CT

HAEA Detroit Area Community Connections Event Capitol Hill
Saturday October 25th at 11:00 AM - 3:00 PM ET

HAEA Connecticut Community Connections Apple Picking Luncheon
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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.