HAEA Capitol Hill Day: 250 Grassroots Advocates Visit 167 Congressional Offices and Get Results

Last month, more than 250 HAEA advocates from across the United States came together for the HAEA's annual Capitol Hill Day, meeting with 167 congressional offices to share the experiences of people living with HAE and their families. During these meetings, advocates highlighted the importance of policies that protect access to life-saving therapies and support continued investment in HAE research and innovation.

The impact of our Capitol Hill Day visits is clear. In the past several weeks, 17 members of Congress have signed on as new cosponsors of the legislation we asked them to support.

The Capitol Hill Day program featured an engaging, interactive training program to help HAEA friends sharpen their knowledge of legislative policy and learn techniques of effective storytelling. Our advocates learned how to communicate their personal experiences so policymakers understand how healthcare and research policies and priorities affect people with HAE and other rare conditions.

Thank you to everyone who participated in the HAEA 2026 Capitol Hill Day! Your grassroots advocacy is yielding significant results while raising awareness of how HAE affects our community.

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HAEA Scholarships Are Now Open for Anyone with HAE Planning to Attend College in the Spring of 2027!

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, 2026 - September 30, 2026
• 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.
Apply for the HAEA Scholarships by clicking HERE!

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

Back-to-School: Be Prepared for a Successful School Year with HAE

As a new school year begins, a little preparation can go a long way in helping students with HAE stay safe, confident, and ready to learn. Before school starts, consider these important steps:

• Review your HAE Action Plan with your healthcare provider and make sure it is up to date.
• Meet with school personnel, including the school nurse, teachers, coaches, and other staff, to discuss HAE, recognize the signs of an attack, and understand your emergency treatment plan.
• Ensure on-demand medication is always available. Verify that medications are current, stored appropriately, and accessible at school or carried by the student when appropriate.
• Know who to contact if an attack occurs and ensure emergency contact information is current.
• Plan for extracurricular activities such as sports, field trips, and after-school events so medication and emergency plans are always included.
• Encourage self-advocacy. As children grow, helping them understand their condition and communicate their needs builds confidence and independence.

For college students, additional planning may include identifying the nearest emergency department familiar with HAE, locating a nearby HAE specialist if needed, and ensuring roommates and resident advisors know how to respond during an emergency. For additional resources, check out the HAEA College Transition Guide here.

Remember that emotional preparation is just as important as medical preparation. Starting a new school year can bring excitement, but it may also increase stress—one of many factors that can contribute to HAE attacks in some individuals. Maintaining routines, getting adequate sleep, staying hydrated, and communicating openly with teachers and family members can help students feel supported throughout the year.

The HAEA Health Team is available to answer questions, provide educational resources, and help families navigate school planning. With preparation and the right support, students living with HAE can focus on what matters most—learning, growing, and enjoying a successful school year.

For additional information and support in preparing for back to school, take the HAEA’s Back to School Academy course. The HAEA has also developed a Back to School guide that includes information about 504 plans, sample school nurse letters, and tips for a successful partnership in your child’s educational journey. Access the HAEA’s Back to School resources here.

Take a break from the busy back to school season and join one of our CARE groups.

Upcoming HAEA CARE Groups

• 1st Wednesday Evening of the month at 7:30 PM EST / 4:30 PM PST
• 2nd Thursday Morning of the month at 11:00 AM EST / 8:00 AM PST
• 3rd Tuesday Evening of the month at 10:00 PM EST / 7:00 PM PST

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

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Celebrating the Next Generation of HAEA Leaders During HAEA Youth Advocacy Month

Throughout 2026, we’ve been amazed by the courage, compassion, and leadership demonstrated by so many young advocates. From sharing their personal HAE journeys and educating others to speaking with members of Congress during the HAEA Capitol Hill Day, these young leaders have shown us that their voices truly have the power to create meaningful change.

Now, it's your chance to help recognize their impact. Nominations are now open for the 2026 HAEA Youth Advocacy Achievement League, a special recognition program honoring young advocates who are raising awareness, inspiring others, and strengthening our HAEA community.

Nominations close September 10, and all young nominees will be recognized during Youth Advocacy Month in October.

Nominee Requirements:

• Must be a member of the US HAEA
• Must be a U.S. resident
• Must be 25 years old or younger

Nominate a Young Advocate HERE!

Join us in celebrating the next generation of HAE advocates whose passion and dedication are helping shape a brighter future for people with HAE.

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Meet HAEA Friends In Oregon: Attend the HAEA Community Connections Event at the Oregon Zoo

The HAEA invites you and your family to join us for a special Community Connections event at the Oregon Zoo in Portland on Saturday, September 5, 2026. This family-friendly gathering is a wonderful opportunity to connect with others in the local HAE community and spend time with people who understand life with HAE.

We will begin the afternoon with a catered lunch and a Community Connections gathering. Afterwards, HAEA friends may explore the zoo at their leisure and enjoy the rest of the day with family and new friends.

Registration includes admission to the Oregon Zoo, lunch, and an HAEA swag bag for everyone in your group. All family members, including children, must be registered in advance.

We hope you will join us for an afternoon of community, connection, and family fun. Space is limited, so register today!

Register TODAY

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Read This Month’s HAEA Community Blogs
Finding Community at Camp Brady: Family Stories of Connection and Hope

In April 2026, the HAEA hosted Camp Brady, the very first sleep away camp exclusively for children and families affected by HAE. This first of its kind event was held at the Painted Turtle, located in the hills just north of Los Angeles County.

They built lifelong friendships, gained valuable education, and created lasting memories together. Families left Camp Brady with stories of encouragement, hope, and belonging. This year, we asked a few families to share what Camp Brady meant to them.

Read more about it HERE!

Meet Landen: Redefining Life with HAE From his childhood diagnosis to his decision to pursue a career in medicine, Landen shares how living with HAE has shaped his life, strengthened his resilience, and inspired his passion for helping others. Read more about it HERE!

Interested in sharing your story? Please contact Carlie Hines at carlie@haea.org!

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HAE Speaks Podcast - Stronger Together: One Family's HAE Journey


In this month's episode of the HAE Speaks Podcast, the Warner-Mukes family shares their journey of living with HAE together. From navigating diagnosis and treatment to supporting one another through the challenges of daily life, they offer an honest conversation about what it means to face HAE as a family. Through their shared experiences, listeners will gain insight into the power of resilience, the importance of understanding each family member's perspective, and the strength that comes from navigating HAE together.

Watch the podcast by clicking HERE!

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Join the Hive: Participate in the ADVANCE HAE Scientific Registry!

Just like every bee plays a role in the hive, every member of the HAE community can help advance research. The ADVANCE HAE Scientific Registry brings together patient experiences to help researchers better understand HAE, improve care, and support future treatment developments.

Whether you're new to the registry or already participating, your involvement matters. New participants are encouraged to join the registry, while current members are asked to log in and update their information. We’ve recently added brand new forms that will help capture even more valuable insights about the HAE experience, making your participation more important than ever.

By sharing your experiences, symptoms, and treatment journey, you're helping build a stronger foundation for HAE research and ensuring the patient's voice remains at the center of future discoveries. Every contribution strengthens the hive!

For more information or any questions you have, please contact Sherry Swanson at sherryswanson@haea.org.

Join the Scientific Registry HERE!

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Roundtable with the CEO: Tony Has a Conversation with a CSL Executive Director

In this new HAE Speaks Podcast series, Tony (HAEA CEO & Chairman of the Board) sits down with Tom Groeling, Executive Director of Specialty Franchise at CSL.

Together, they discuss CSL's long-standing commitment to the HAE community and the company's vision for advancing care. The conversation also explores CSL's HAE therapies, ANDEMBRY® and HAEGARDA®, and provides an overview of their intended use, key features, and available support programs.

Click HERE to watch the episode.
Note: This podcast is for educational purposes only and is not meant to provide medical advice. The HAEA is company- and product-neutral. We don’t endorse specific therapies and we don’t compare products. Treatment comparisons and selection are the sole responsibility of people with HAE and their physicians.

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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 Food and 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 provides 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 take a more active role in your health care.

The following is a list of clinical trials currently underway. If you are interested in receiving more information about clinical trials or in participating in any of the trials listed below, please fill out the Clinical Trial Interest Form.

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ALPHA-ORBIT Trial

The US HAEA is currently assisting Astria Therapeutics in recruiting participants 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, with a higher chance of receiving the study drug than 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 study 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, which interferes with the production of the plasma kallikrein (PKK) gene and is 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 treatment with 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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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.

All participants who joined the CHAPTER-4 trial will receive the once-daily drug deucrictibant at no cost until it is approved for commercial use by the Food and Drug Administration (FDA). 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 to advance HAE treatment options.

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 require dedicated on-site visits, though some may be completed virtually.

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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 the study drug or 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, 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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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.

All participants will receive garadacimab at no cost, starting with an initial loading dose followed by monthly subcutaneous injections for two months. No washout period is required 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.

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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 by recording attacks in an electronic 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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OASISjunior Trial

The US HAEA is partnering with Ionis Pharmaceuticals to enroll children and adolescents in the OASISjunior study, a Phase 3 clinical trial evaluating donidalorsen as an investigational therapy for HAE in children.

Donidalorsen works by reducing prekallikrein (PKK), a protein in the body that can trigger HAE attacks.

This study is open to children and adolescents with HAE who are ages 2 to less than 12 years old, diagnosed with HAE Type I or II, and are either new to treatment or already on long-term prophylaxis for HAE.

All participants will receive donidalorsen at no cost for the 18-month duration of the study, and will be required to visit the study clinic for scheduled assessments.

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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.

This Phase 3 study is evaluating a new treatment 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 in which two out of three participants will receive the study drug. Participants will receive two injections of ADX-324 or a 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.

Eligible participants must be 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, HAE with Normal C1-Inhibitor, or AAE and are interested in learning about new clinical studies to prevent attacks, please fill out the Clinical Trial Interest Form to see if there is an active clinical trial site in your area.

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Update Your HAEA Membership!

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

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

Update your HAEA membership 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 © (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.