US Hereditary Angioedema Association


IN THIS ISSUE
HAE IN-MOTION® Has Officially Begun: Let’s Get Moving Together Open Enrollment Season Is Upon Us: Be Prepared to Understand Your Options Apply Today for the HAEA Youth Leadership Council & 2026 Social Media Internship! Shining a Spotlight on the Next Generation of HAEA Leaders New Resource for Young Adults: Insurance Frequently Asked Questions Camp Brady at The Painted Turtle: Act Now Before Travel Grant Applications Close October 15th	HAE Speaks Podcast: Understanding Medicare Enrollment Create a True Partnership with Your Physician To Better Manage your HAE Learn About HAE Medicines by Viewing the HAEA Treatment Education Series Webinars HAEA CARES: Feeling Overwhelmed by Open Enrollment? You’re Not Alone In This Journey Clinical Trial Updates Social Media Snapshots

Track Your Steps While Raising HAE Awareness! Pre-Register today for the HAE IN-MOTION® - Step Up for HAE Event this October

October is here, and so is the HAE IN-MOTION® event, our virtual challenge created to raise awareness, promote healthy activity, and support the HAEA community. Whether you’re walking, running, or bicycling, each action brings us closer to our goals and makes a meaningful impact.

Here’s how to get started:

Register to receive your FREE Swag Bag here: https://www.haea.org/autoforms/f/406
Download the Charity Miles App (iOS or Android).
Create your profile and connect to your phone's Health App. When prompted, select "HAEA" as your charity.
Get moving! Track your activities, wear your swag, and share your photos to raise awareness for HAE all month long!

The goal of the HAE IN-MOTION® is to unite the HAEA community to raise awareness and research for HAE. Thanks to the enthusiasm of those already involved, we are making great strides toward these targets. Every action you take truly counts!

Open Enrollment Season Is Upon Us: Be Prepared To Understand Your Options

It is important for everyone to take time to research and evaluate your current insurance plan to make sure that it continues to meet your healthcare needs, including coverage of your HAE medications.

Not sure where to start? Listen to the latest episode of the HAE Speaks Podcast: 10 Must-Ask Insurance Questions for HAE here.

If you still have questions after reviewing the information below, the HAEA Health team is here to help you as you navigate the sometimes-confusing insurance open enrollment season. Please contact us via email at health@haea.org or call us at 866-798-5598.

Important Open Enrollment Information:

Medicare Open Enrollment October 15th - December 7th
www.medicare.gov
here are several changes related to Medicare for 2026, so it is important to make an informed decision and choose a plan that will meet your needs.

Do You Have Questions About Medicare? Explore the HAEA Academy Medicare Basics Course

Take the FREE course today by clicking here.

Affordable Care Act (ACA) Open Enrollment November 1st - December 15th
www.healthcare.gov
Many of the ACA insurance plans cover HAE medications, making them a good option to investigate if you need to make a change in your insurance coverage. As with any insurance plan, it is important to research specific plans to ensure you will have the coverage needed. If you enroll prior to December 15th, your coverage will begin on January 1st, 2026.

Employer Healthcare Plans - Check with your employer for specific enrollment dates and plan options, including medication coverage. It is important to research your plan even if you are with the same employer. There can be changes in formularies, so your HAE medication or provider may not be in your plan for 2026. Evaluating your health insurance options and working with the HR department at your employer can be helpful in determining the plan that will work best for you.

Financial Assistance If you are receiving financial assistance from one of the foundations like The Assistance Fund (TAF) or Accessia Health, it is important that you check re-enrollment dates, so you don’t miss any deadlines for financial assistance in 2026.

The Assistance Fund https://tafcares.org/
Accessia Health https://accessiahealth.org/

Apply Today for the HAEA Youth Leadership Council & 2026 Social Media Internship!

Are you ready to grow your leadership skills and connect with the HAEA community? The HAEA is now accepting applications for the 2026 Youth Leadership Council (YLC) and Social Media Internship!

The YLC is open to HAEA youth ages 12–18
The Social Media Internship is open to young adults ages 17–25

These programs offer:

A chance to attend a powerful in-person training in Washington, DC
Professional development through exciting team-based projects
Travel and advocacy opportunities with the HAEA
A welcoming, encouraging community of youth leaders

Deadline to apply: November 14
https://www.haea.org/autoforms/f/404

Shining a Spotlight on the Next Generation of HAEA Leaders

Every October, we celebrate Youth Advocacy Month by showcasing the stories and activities of the youth advocates in our community. This year, we are excited to recognize over 35 young leaders who were nominated to the Youth Advocacy Achievement League, a program that honors young advocates who have stepped up in powerful ways that include:

Raising awareness about HAE,
Championing legislative change,
Supporting their peers, and
Strengthening their local communities.

We’ll be sharing Youth Advocacy Achievement League stories across social media in October. We invite you to follow along, celebrate their achievements, and join us in honoring the next generation of HAEA leaders who are paving the way toward a brighter future.

Thank you to Pharvaris for sponsoring this program.

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

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 mostly with fun and a 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.

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.
Applications close on October 15th. Click here to apply:
https://www.haea.org/autoforms/f/402

Podcasts

HAE Speaks Podcast: Understanding Medicare Enrollment

In this episode, HAEA Health Services Manager, Troyce Venturella, sits down with Marie, an individual living with HAE, who has navigated the complexities of Medicare enrollment firsthand.

Together, they discuss the key steps, challenges, and considerations in selecting the right Medicare plan, offering valuable insights for others in the HAEA community who face important healthcare decisions.

Listen to the episode by clicking HERE!

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.

Learn About HAE Medicines by Viewing the HAEA Treatment Education Series Webinars

Topic: Living with HAE: Insights and the HAE Community Survey

Guest Speakers: William Lumry, MD, and Kim Wilson, Person Living with HAE

Sponsored by: Intellia Therapeutics

Watch HERE!

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

Finding an insurance plan that works for you can be confusing and stressful

If you find that you are feeling overwhelmed with finding an insurance plan or stressed about managing your HAE, you are not alone. Living with a rare disease can feel isolating, but there’s a whole community of people with similar experiences. Join one of our CARE Groups to connect with others in our HAE community.

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

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.

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.

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.

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.

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.