The Countdown to the 2025 US HAEA National Summit in Baltimore is On!

In a few short days, 1,200 members of our incredible HAEA community will gather in Baltimore, Maryland for the 2025 US HAEA National Summit.

This event is designed to provide HAEA friends unique opportunities to:

• Build lasting friendships with others who truly understand HAE,
• Learn from leading HAE physicians and researchers,
• Get the latest information on currently available treatments and therapies being tested in clinical trials,
• Take part in a wide variety of fun activities,
• Hear about what the HAEA is doing to protect what matters most to our community, and
• Feel recharged with knowledge, support, and a true sense of belonging.

Want a glimpse of what’s in store? Check out the Summit Agenda here.

If you need assistance before the event, the HAEA Events Team is happy to help. Reach out anytime at events@haea.org.

See you soon in Baltimore!

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Are you planning to attend a college or university in the Spring of 2026? Applications for the Spring 2026 HAEA Scholarships will open on August 1st!

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/youth_resources

Key Information:

• Application Period: August 1, 2025 - September 30, 2025
• Eligibility: Students with HAE between the ages of 17-30
• Membership Requirement: Scholarship applicants must be members of the US HAEA

If you have any questions about the Pam King HAEA Scholarship or the HAE Scholarship for Aspiring Healthcare Professionals, please contact scholarships@haea.org

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Expand Your Knowledge with HAEA Academy Courses

The HAEA Academy is an online platform that offers a range of free online courses designed to support HAEA friends at every stage of their HAE journey.

Enroll in the following free courses on the HAEA Academy:

• Travel and Emergency Preparedness: Learn practical tips and resources to confidently plan for safe travel and handle unexpected situations while managing HAE.
• Advocacy 101: Introduce yourself to the basics of advocacy, how to effectively share your story, and make an impact on health policy.
• Back-to-School: Discover tips and resources for navigating a new school, advocating for accommodations, or educating staff on HAE.
• Clinical Trials: Explore the importance of clinical trials and how you can help to advance the next generation of promising HAE treatment options.
• Medicare Basics: Learn key information about Medicare to understand coverage options and make informed healthcare decisions while managing HAE.
• HAE TrackR App: Understand how to use this valuable tool, which helps you to easily track and manage your HAE.
• HAE and Stress Management: Take this course to discover practical tools and techniques for managing your mental health and improving your quality of life with HAE.

Enrolling is easy – simply click on the link HERE to get started!

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• Topic: On the Road with HAE
• Guest Speaker: Chaeli Wallace, Senior Manager, Patient Community and Education at Takeda.
• Sponsored by: Takeda

This webinar offers guidance on how to confidently manage Hereditary Angioedema (HAE) while traveling. It covers key topics including understanding HAE and its triggers, preparing for trips, and ensuring you have the right support and resources for your HAE while away from home. Whether you're planning a short getaway or a long journey, this session helps you stay informed and prepared every step of the way!

You can access the fully on-demand webinar by clicking HERE!

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#BeyondHAE Podcast: A Family’s Journey with HAE

In this compelling episode of the #BeyondHAE podcast, host Ohm shares a deeply personal perspective on growing up with HAE, first as a witness to his mother’s unexplained medical struggles, and later as someone diagnosed himself. Ohm reflects on how HAE has shaped his childhood, family dynamics, and understanding of what it means to live with a rare and unpredictable condition. From missed birthdays to emergency hospital visits, Ohm opens up about the emotional weight of watching a loved one suffer, the power of preparation, and how his family turned chaos into control. He also discusses the importance of community, advocacy, and hope for future treatments like gene therapy. Whether you’re navigating a new diagnosis or have been living with HAE for years, this episode is a powerful reminder that while HAE brings uncertainty, no one has to face it alone.

Listen to the episode by clicking HERE!

HAE Speaks Podcast: CHAPTER-3 , Pharvaris Oral Prophylaxis Phase 3 Study

In this episode of the HAE Speaks Podcast, Dr. Raffi Tachdjian (UCLA) and Pharvaris discuss the HAE CHAPTER-3 Study — a new HAE attack prevention trial currently enrolling. The study explores the safety and effectiveness of deucrictibant, an investigational once-daily oral treatment aimed at preventing HAE attacks.

Listen to the episode by clicking HERE!

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

Summertime brings joyful gatherings with family and friends, but can also sometimes bring stress. A little preparation and self-care can help you enjoy the moment and stay well.

Proactive Planning and Preparations

• Set boundaries with family and friends with regards to time and activities. You don’t have to do it all.
• Plan ahead, consider possible triggers for stress you might encounter and have strategies to respond to them including having your acute HAE medications available for possible swells.
• Schedule breaks and take time to step away and recharge.

Practice Healthy Coping Mechanisms

• Practice mindfulness techniques like deep breathing or meditation.
• Bring a book, music, or a hobby to enjoy during downtime.
• Prioritize physical health, including a healthy diet, regular exercise, adequate sleep, and of course, staying on schedule with your HAE treatment plan.
• Practice gratitude by acknowledging the positive aspects of the gathering and appreciating the time spent together.

For more stress management techniques, check out the HAE & Stress Management module in the HAEA Academy.

CARE Groups will be taking the month of July off with many gatherings planned.Our experiences with HAE can shape our mental health journey and many of us have developed positive coping strategies. By sharing experiences, we can learn from each other and explore options for improving our overall mental health.

We hope you can enjoy time with family and friends celebrating and connecting. We look forward to you joining us in August 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

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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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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 between the ages of 12 and 75 years old, and have experience using standard-of-care treatment to manage on-demand treatment for 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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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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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.

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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.