US Hereditary Angioedema Association


IN THIS ISSUE
Embracing a Brighter Future at the 2025 US HAEA National Summit in Baltimore Ally Shares How the HAE International (HAEi) LEAP Program Trains, Motivates, and Empowers the Next Generation of HAE Advocates: Read the HAEA Community Blog	Listen to this Month’s HAE Speaks Podcast Episodes Planning Summer Travel? Don’t Miss the Next HAEA CARES Meeting Clinical Trial Updates Social Media Snapshots

Embracing a Brighter Future at the 2025 US HAEA National Summit in Baltimore, MD!

Are you ready to gather with HAEA friends from across the country to experience the fellowship, shared purpose, and unforgettable sense of community that only occurs at an HAEA summit?

The 2025 US HAEA National Summit is just a month away and we expect over 1,200 HAEA friends including people with HAE, their caregivers, healthcare professionals, and pharmaceutical company representatives. At this exciting event, you will have the opportunity to:

Connect with families who understand your journey
Hear from world-renowned HAE specialists
Discover the latest in treatments, research, and advocacy
Engage in fun and meaningful activities for all ages
Leave feeling encouraged, educated, and empowered

For a sneak peek of Summit activities, you can access the Summit Agenda here. If you have any questions or concerns before the event, please contact the HAEA Events Team at events@haea.org.

We can’t wait to see you soon in Baltimore!

Ally Shares How the HAE International (HAEi) LEAP Program Trains, Motivates, and Empowers the Next Generation of HAE Advocates: Read the HAEA Community Blog

Meet Ally, a young HAE advocate who shares how her participation in the 2025 HAEi LEAP program helped her gain confidence, connect with others, and launch a project to support HAE youth transitioning to college.

The HAEi LEAP program (Learn, Experience, Advocate, Pave the way) includes a 3-day intensive workshop and a 12-week online curriculum. Participants learn advocacy techniques, develop professional skills, and complete a personal project in collaboration with their member organizations.

Read My Experience at the HAEi LEAP Program by clicking the link HERE!
Would you like to share a unique story or opinion about your HAE? The HAEA Community Blog is the best platform to share your story with other members of the HAE community. You can share your story HERE!

Podcasts

HAE Speaks Podcasts
Youth

Episode 53: Legislative Update from our Washington Office

Tune into the latest episode of our “Legislative Series” of the HAE Speaks Podcast, where we have a conversation with Dane Christiansen from our Washington office about pressing advocacy updates, including:

Potential cuts to Medicaid
Restructuring at federal agencies
The executive order on drug pricing

Whether you’re just beginning your advocacy journey or looking to stay informed, this episode is packed with valuable information you don’t want to miss!

Listen to the episode now by clicking HERE!

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

Focus on Your Overall Well-being During Mental Health Awareness Month with the HAEA CARES Groups

Summer is a great time to enjoy sunny weather, travel, and spend time with family while school is out. Here are some tips to help you stay safe during summer outings and trips.

Plan Ahead

Before you travel, make sure you have packed sufficient doses of HAE medicines and medical supplies you need.
Remember to keep your HAE medications at the correct temperature; extreme heat may cause some medications to lose efficacy.
Prepare for the unexpected, always keep your medications with you, and have additional treatments and supplies available in case of travel delays.
Research the area you will be traveling to and identify possible hospitals in case an emergency arises. Keep your doctor’s note on what they want your treatment to be when you are out of the area.
Always use sunscreen, even on cloudy days, and make sure to apply at least 15 minutes before stepping outside.
Drink plenty of water. Drinking water helps lower your body temperature and replace the fluid you lose through sweating.

More Travel tips are available in the HAEA Academy course: Travel and Emergency Preparedness.

CARE Groups will not be taking the summer off. We hope you can join us 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

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 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.

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.

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!


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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.