Help Us Advance Current Understanding of HAE By Participating in a New HAEA Study

New treatments and standards of care introduced over the past 15 years have brought significant changes to how HAE affects members of our community. We cordially invite you to participate in an HAEA study that defines what living with HAE looks like in the current environment and examines how individual experiences might change over time.

We understand your time is valuable, so you will receive $50 every time you complete a short survey. You will be asked to fill out 5 individual surveys, and you can earn up to $250 over a 12-month period.
This HAEA-initiated project in collaboration with a trusted partner, Adelphi Real World, is designed to:

• Provide data that supports reimbursement submissions for HAE treatments,
• Result in HAEA-authored scientific publications and presentations, and
• Contribute timely real-world evidence to support the next iteration of US HAEA Medical Advisory Board Treatment Guidelines.

Please remember that your personal information will remain completely confidential and will never be linked to your responses.

This project is vitally important to continue advances in HAE care. To receive the survey link, please email Karissa Ewing at karissa@haea.org.

If you have any questions, please contact the Community Research Team at research@haea.org.

---

HAEA Shared Decision Making Tool: 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.

---

HAEA Community Blog: Staying Resilient After My Diagnosis


Julie, an individual with HAE, highlights her lifelong struggle with unpredictable and painful HAE attacks that impacted every part of her life. After finding an effective preventive treatment, she regained her freedom, confidence, and hope, showing that life with HAE can be stable, fulfilling, and full of possibilities.

Read more about it here.

---

HAE Speaks Podcast: End of Year Legislative Update

In this month's episode, we welcome back Dane Christiansen for a comprehensive end-of-year legislative update. Dane breaks down the key policy developments, federal priorities, and advocacy efforts that shaped 2025, and what they mean for the HAE community moving into the new year.

Listen to the episode now by clicking HERE!


#BeyondHAE Youth Produced Podcast:
Moments That Mattered – HAEA Youth on 2025 and Beyond

In this episode of the #BeyondHAE Podcast, host Kobe sits down with HAEA Youth Leadership Council members Sophia, Cassidy, and Zach for an engaging and inspiring conversation. Together, they reflect on memorable highlights from HAEA events and youth programs throughout 2025, sharing personal experiences and key moments that made the year meaningful. The group also looks ahead to the exciting opportunities, initiatives, and events coming for HAEA youth in the new year.

Listen to the episode by clicking HERE!

---

Start the New Year Connected: Update Your HAEA Membership!

A new year is the perfect time to make sure we have your most up-to-date information so you never miss important updates on:

• Community Announcements,
• HAE therapies & Clinical Trials,
• Community Events,
• Educational Resources,
• Legislative & Advocacy Updates, 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 health@haea.org or 866-798-5598.

Kick off the new year by updating your HAEA membership HERE!

---

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

Focus on Your Health This Season

As we often think about important aspects of our well-being like nutrition and physical activity, now is a wonderful time to start a new health routine. Here are a few suggestions to improve your overall health:

• Increase Your Activity: Aim for at least 30 minutes of walking each day.
• Reduce Stress: Find effective ways to manage stress, which can benefit your HAE
  Consider options like:
• Going for a walk
• Practicing yoga
• Meditating
• Joining a support group – HAEA CARES Groups meet 3x a month

This is also the perfect time to focus on your HAE management plans for the upcoming year:

• Schedule a Doctor's Appointment: Review and update your treatment plan with your doctor. Don’t forget to mark your calendar for when your prior authorization and prescriptions are up for renewal.
• Update Insurance Information: Notify your doctor, pharmacy, and patient support team at your pharmaceutical company of any new insurance details. Remember that your member number might change even if you have the same insurance plan. Keeping this information current can help prevent delays in receiving your medication.
• Check in with the Assistance Programs: If you are enrolled in The Assistance Fund or with Accessia Health, ensure that your information is updated with them as well.

By taking these proactive steps, you can decrease your stress, enhance your health and well-being in the new year.

The HAEA Health team is here for you. Contact us at health@haea.org or 866-798-5598.

---

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

Don’t miss the latest HAEA news and announcements, connect with us on social media!


Update your HAEA membership information HERE!

---

10560 Main Street, Suite PS40 Fairfax City, VA 22030		CONTACT AN HAE ADVOCATE: (866) 798-5598
DONATE		JOIN HAEA
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.