Help Plot the Future of HAE Care and Earn Up to $250 by Participating in a New Series of HAEA Surveys

Register Now! The First Survey Closes on February 28th

Years of consistent advocacy by HAEA Friends have brought new therapies and improvements in our quality of life. Help us write the next chapter in HAE treatments and standards of care! We cordially invite you to participate in an exciting HAEA study that will:

This HAEA-initiated project in collaboration with a trusted partner, Adelphi Real World, is designed to:

• Examine the patient experience over a one-year period, and
• Influence the future of how physicians, insurers, and pharmaceutical companies work with members of the HAEA community.

This HAEA-initiated project is being conducted in collaboration with a trusted partner, Adelphi Real World.

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 spaced over a 12-month period and can earn a total of $250! It is important to note that you must participate in the first survey before February 28th to be eligible for the four subsequent surveys.

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

This project is vitally important to continue advances in HAE care. If you are interested in participating, please reach out to Karissa Bumann at karissa@haea.org to receive your individual survey link.

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Are you Planning to Attend a College or University in the Spring of 2026?

The HAEA is proud to support students living with Hereditary Angioedema (HAE) as they pursue their educational goals.

Applications are now open for the Fall 2026 semester, including the:

• Pam King HAEA Scholarship, which supports students with HAE across a wide range of academic paths
• HAEA Scholarship for Aspiring Healthcare Professionals, designed for students with HAE pursuing careers in healthcare and related fields

If you’re a student with a confirmed HAE diagnosis and a member of the US HAEA, you may be eligible to apply.

Applications are open between February 1st – March 31st, 2026.

Please note that scholarship applications are a multi-step process and require coordination with your school, so starting early is encouraged.

For more information or questions, contact scholarships@haea.org.

Apply for the HAEA Scholarships by clicking HERE!

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Advocacy Action Alert: Key Health Legislation Passed in the Congress

This month, the House and Senate passed their appropriations packages and they include two important bills from the HAEA legislative agenda:

• The Accelerating Kids Access to Care Act, which creates a pathway for children on Medicaid to access out-of-state specialty care.
• The Give the Kids A Chance Act, which reauthorizes the FDA priority review voucher program for pediatric rare disease drugs in the pipeline.

Congress has also recognized the urgent need for continued research on HAE with Normal C1 Inhibitor directly in the appropriations bill text:

“The Committee applauds the previous work across NIH to identify genetic mutations that cause HAE and to advance treatment options and care for affected individuals, moving a once deadly rare disease to a largely manageable chronic illness. However, the Committee notes that challenges persist in diagnosis, treatment, and care for HAE patients with Normal C1 Inhibitor and encourages NIAID to work with other Institutes and Centers, and the stakeholder community, to advance research in this key area.”

The tireless efforts of the HAEA community have resulted in elected officials finally understanding the unmet needs of those living with rare, chronic illnesses like HAE. We are excited to see this progress in an official congressional record, and we look forward to continuing our work with legislators to improve diagnosis, treatment, and access.

Thank you for your ongoing advocacy and for using your voice to create meaningful change for families living with HAE.

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In this month’s featured HAEA Community Blog article, Allergy and immunology specialist, Kim Poarch, MPAS, PA-C, reviews the importance of shared decision-making for people with HAE. Learn how to collaborate with your healthcare provider to discover the treatment options best suited to you!

Read more about it HERE!

Interested in sharing your story? Please contact Carlie Dalgo at carliedalgo@haea.org!

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Help Your Child, Teen, or Young Adult Cope with HAE by Ordering an HAEA Cares Kit

Navigating life with HAE is uniquely challenging for the youngest members of our community. To offer support during these times, the HAEA Cares Program offers personalized support kits tailored for children, teens, and young adults diagnosed with HAE. These kits are delivered directly to their doorsteps to brighten their days with joy, surprise, and a comforting message that they are not alone in their journey.

Inside each HAEA Cares Kit, recipients will find carefully curated materials designed to make their HAE experience more manageable. Our goal is to empower young heroes, fostering resilience, understanding, and a sense of community. To order an HAEA Cares Kit for your child and explore the resources within, click the link below. Together, let's ensure that HAEA Youth have the support they need to thrive with confidence.

Request a Cares Kit Today!

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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!

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

Heart Health & Whole-Body Wellness with HAE
Living well with HAE means caring for the whole person—not just managing attacks. February is Heart Health Awareness month, and heart health is an important part of overall wellness and can support energy, resilience, and quality of life.

Simple, heart-healthy habits like gentle movement, balanced nutrition, stress management, and adequate rest can make a meaningful difference. Listening to your body, moving at your own pace, and working with your healthcare team can help ensure these choices fit safely into your HAE management plan.

Healthcare professionals note that everyone’s HAE journey is unique. Supporting heart health is one more way to support long-term wellness, empowerment, and living fully with HAE. The HAEA CARE Groups are another great way to support each other. We meet three times a month and would love to have you join us.

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

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

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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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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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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 attacks. 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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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 drug versus 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 and 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.

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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 via electronic recording attacks in an 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.

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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.

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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.

As an open-label study, all participants will receive free garadacimab, which includes a starting dose of garadacimab, followed by once-monthly subcutaneous injections for two months. There is no washout period required for this trial 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.

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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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.