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IN THIS ISSUE


hae day
hae day :-) 2026 Theme: Awareness Through Education

Every year on May 16th, the global HAE community comes together for hae day :-), a day dedicated to education, awareness, and showcasing the strength of our community. It is a time to connect, reflect, and stand united in support of people and families affected by HAE.

In the coming days, the US HAEA will share two exciting educational videos designed to make HAE easier to understand for people of all ages.

This hae day :-) , we ask you to give back to the HAE community by sharing these videos with the people in your life:
  • Friends and family
  • Teachers, coaches, and school staff
  • Coworkers and group chats, and
  • Your social media community.
Tag @us_haea on Instagram or Hereditary Angioedema Association - HAEA on Facebook to help us celebrate and amplify your awareness efforts.

Send an email. Share a post. Text a link. Start a conversation.

Learn more and make a charitable donation by visiting haea.org.
HAEI
Camp Brady: An HAEA Weekend to Remember

The HAEA community came together last month for the very first Camp Brady at The Painted Turtle in Lake Hughes, CA. This special weekend was full of joy, camaraderie, and shared experiences. More than 130 community members representing 27 families gathered to build meaningful relationships with HAEA friends who are experiencing a similar journey.

Perhaps most importantly, Camp Brady provided a medically safe environment where children could fully participate in every activity, allowing parents and caregivers the chance to relax, interact with other HAEA families, and watch their children enjoy being kids without hesitation or worry.

Throughout the weekend, camp was alive with energy as children explored a wide variety of activities, including art, crafts, boating, archery, ziplining, woodshop, and dancing. Each day was filled with laughter, confidence-building, and establishing new friendships that will extend far beyond camp. Based on the success of this inaugural event, we look forward to including even more families in a future HAEA Camp Brady weekend. We are incredibly grateful to everyone who worked diligently to bring this unique, youth focused event to life!
HAEI
Empowering the Next Generation of Leaders – HAEA Youth Programs

The 2026 HAEA Youth Leadership Training weekend brought together 25 teens and young adults who are members of our Youth Leadership Council or serve as Social Media Interns. Over the course of two days, participants engaged in hands-on workshops focused on media training and podcasting, advocacy education, social media messaging, and communicating in poised and professional manner. Each session was designed to equip participants with the tools they need to represent themselves and the HAEA community.

This gathering not only strengthened leadership skills but also deepened relationships across our community. We are incredibly proud of these young leaders and can’t wait to continue this journey alongside them.

“To be part of the HAEA community to me is having one whole big family and having friends that understand what you're going through, and also knowing we are helping to make strides in the HAEA community. I would tell anyone interested in getting involved in the HAEA youth programs that once you join, you are brought into this amazing community where everyone is so friendly, and you gain lifelong bonds with people and meet new people every year. “ - Caroline, age 16
A Special Episode of the HAE Speaks Podcast: Roundtable with the HAEA CEO – A Conversation with KalVista’s Chief Commercial Officer

Watch the Mental Health and HAE Treatment Education Series Webinar
In this new HAE Speaks Podcast series, Roundtable with the CEO, HAEA CEO & Chairman of the Board, Tony Castaldo, sits down with Nicole Sweeny, the Chief Commercial Officer at KalVista Pharmaceuticals.

Tony and Nicole discuss KalVista’s mission and aspirations for the future health of the HAEA community. They also address, EKTERLY®, a newly approved oral, on-demand HAE treatment option, and provide practical insights into KalVista’s programs for access, insurance coverage, and efforts to expand treatment options for children.

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.
  • Topic: Mental Health and HAE
  • Guest Speakers: Priya Bansal, MD, Melissa (Individual with HAE), and Alexandra Hansel (Product Manager, HAE Franchise Marketing)
  • Sponsored by: CSL
Join HAE specialist, Dr. Priya Bansal, and Melissa, an individual with HAE, as they discuss the emotional and mental health challenges associated with HAE. They share personal and clinical perspectives, along with practical guidance on how patients can communicate with healthcare providers and access support.

You can access the fully on-demand webinar by clicking HERE!
Read this month’s HAEA Community Blog articles!

Julie What You Don’t See at the Starting Line

Diagnosed with a rare disease after years of unanswered questions, Mariel’s journey is one of strength, healing, and determination.

Through loss, fear, and invisible battles, she continues to push forward, proving that even with limitations, extraordinary goals are still possible. Read more about it HERE!

Jessica Shares her Journey Navigating HAE on The Lifetime Channel Series: The Balancing Act Julie

Jessica’s story brings the lived experience of HAE into focus, highlighting the realities patients face every day. Featured on The Balancing Act on Lifetime, the segment centers on her personal journey, offering an honest look at the unpredictability of HAE and how it shapes daily life.

By sharing her perspective, Jessica helps raise awareness and gives a voice to others navigating this rare condition. Read more about it HERE!


Interested in sharing your story? Please contact Carlie Hines at carlie@haea.org!
Stay Informed With the HAEA Treatment Education Series
Intellia
  • Topic: DAWNZERA™ (donidalorsen)
  • Guest Speakers: Michael Manning, MD, Morgan Peterson, MSN, APRN, and Individuals with HAE, Lauren and Lindsey
  • Sponsored by: IONIS Pharmaceuticals
In this webinar, clinical experts and members of the HAE community come together to discuss the science behind DAWNZERA™ and what it may mean for individuals living with hereditary angioedema. Attendees will gain insights into the therapy’s mechanism, clinical data, and practical considerations, alongside personal perspectives from Lauren and Lindsey on navigating life with HAE. WATCH NOW BY CLICKING HERE!

Intellia
  • Topic: From Misdiagnosis to Answers: Mistie’s HAE Journey
  • Guest Speakers: Mistie, EKTERLY® Patient Ambassador
  • Sponsored by: KalVista Pharmaceuticals
In this webinar, EKTERLY® Patient Ambassador, Mistie, shares her experience of living with unexplained symptoms for years before being diagnosed with HAE with Normal C1-Inhibitor. She discusses how gaining answers and access to EKTERLY® (sebetralstat), an oral acute treatment, changed the way she manages her attacks. WATCH NOW BY CLICKING HERE!
Listen to HAEA Podcasts to Gain New Perspectives on Living with HAE

Perspectives from a Mother and Daughter with HAE: Listen to the HAE Speaks Podcast

In this episode of HAE Speaks, Cheryl and her daughter Leah share their powerful journey living with HAE across generations. Together, they open up about navigating diagnosis, managing life with HAE, and the unique perspective of both a parent and child living with the condition. They also highlight the importance of advocacy, both within the healthcare system and the broader community, and offer insight into how others can get involved, raise awareness, and make a meaningful impact.

Listen to the episode by clicking HERE!

Voices of the Next Generation: Listen to the #BeyondHAE Youth Podcast
Julie

In this episode of the #BeyondHAE Podcast, we meet Ivy, Sadie, and Kayla, three new members of the HAEA Youth Leadership Council, as they share their personal journeys living with HAE. They open up about their paths to diagnosis, how they manage their condition day to day, and the challenges they’ve faced along the way. A central theme of the conversation is the power of connection, how meeting others who understand their experiences has been both comforting and empowering.

The episode also highlights their participation in the 2026 Youth Leadership Training in Washington, DC, where they began building advocacy and leadership skills. Together, their stories reflect resilience, growth, and the importance of community in navigating life with HAE.

This conversation highlights the power of youth leadership and the impact of empowering the next generation of advocates.

Listen to the episode by clicking HERE!
Health Awareness and HAEA CARE Groups (Community, Acceptance, Respect, Empathy)

Raising Awareness Together To Strengthen Each Other

Community education plays a vital role in improving the lives of everyone affected by HAE. When neighbors, schools, and local organizations are informed, it creates safer, more supportive environments and helps ensure individuals receive the care and understanding they need.

By sharing knowledge and starting conversations, we can reduce misunderstandings and make HAE more visible. Every effort—big or small—helps build a more informed and compassionate community.

Together, we can raise awareness, support one another, and make a lasting impact.

Consider connecting with others in our HAEA community by participating in an HAEA CARE group, which is a great opportunity to support each other, not just on hae day :-), but throughout the year.

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.
Clinical Trial icon 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 about clinical trials or in participating in any of the trials listed below, please fill out the Clinical Trial Interest Form..

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 the 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.

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.

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.

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 a 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.

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 of 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.

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.

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.
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.