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Apply Today to Attend the 2026 HAEi Regional Conference Americas!

HAE International (HAEi) is hosting the Regional Conference Americas in Ottawa, Canada from October 23-25, 2026. The conference is open to people with HAE, caregivers, youngsters, HAE physicians/scientists, and industry representatives from North, Central, and South America.

We are looking forward to seeing many US HAEA Friends in Ottawa!

HAEi is offering travel grants covering flights and lodging. However, a limited number of grants are available and will be awarded through a lottery process.

Apply for a travel grant at travelgrant.haei.org.

Don’t wait to apply! Travel grant applications close at 12:00 CET on April 13, 2026.
Grassroots
HAEA Grassroots Advocacy Network Leaders Make Their Voices Heard in Washington DC

In late February, 17 HAEA Grassroots Advocacy Network leaders from 14 states celebrated Rare Disease Week by participating in the Everylife Foundation Legislative Conference. Over the course of the week, HAEA advocates met with more than 60 congressional offices, ensuring that the voices of the HAEA community were heard on Capitol Hill.

This year’s Rare Disease Week brought together more than 1,000 advocates from across the country. HAEA advocates held conversations with legislators and their staff that communicated the urgent needs of the HAEA community as well as the broader rare disease population.

To learn more about the US HAEA Advocacy program, you can:
Shared Decision Making Tool
HAEA Scholarships Available for Those Planning to Attend a College or University in the Fall of 2026

There’s still time to apply for the Fall 2026 HAEA Scholarships, but the deadline is approaching quickly!

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!
HAE Speaks
HAEA Scholarships Support Adult Learners Seeking Higher Education: Listen to Tina’s Experience on the HAE Speaks Podcast

In this episode of the HAE Speaks Podcast, we hear from Tina S., an individual living with HAE and an adult recipient of the Pam King HAEA Scholarship. Tina shares her journey, the impact of the scholarship, and how educational support can make a difference for individuals affected by HAE, regardless of age or stage of life.

Listen to the episode by clicking HERE!
Sage
The Privilege of Being A Caregiver: Read the HAEA Community Blog

HAE Caregiver, Sage, shares his personal journey from childhood friend, to husband and caregiver, for his wife, Carlie, who lives with HAE.

Through learning to support her during attacks and in everyday life, he reflects on how caregiving is not a burden, but a meaningful privilege rooted in love, partnership, and the small acts that help her live beyond HAE.

Read more about it HERE!
Interested in sharing your story? Please contact Carlie Dalgo at carliedalgo@haea.org!
Watch this month’s On-Demand HAEA Treatment Education Series Webinars!

Understanding Healthcare Affordability for the HAEA Community
healthcare affordability
What does healthcare affordability really mean? Dane Christiansen from the HAEA Washington, D.C. office is here to explain!

Learn more about the healthcare conversations happening on Capitol Hill and how to share your own experiences by tuning into our new advocacy webinar brief!

WATCH NOW BY CLICKING HERE!
Hear How Young People Are Advocating for Rare Disease on Capitol Hill: Tune in to the #BeyondHAE Podcast
Youth
In this special youth-produced episode of the #BeyondHAE Podcast, we hear directly from young leaders in the HAE community who took part in the 2026 EveryLife Foundation’s Rare Disease Week on Capitol Hill.

Listen as these young advocates reflect on their experience participating in advocacy training, attending legislative meetings, and using their voices to help shape policies that impact the rare disease community and people living with HAE.

Listen to the episode by clicking HERE!

Listen to a Candid Conversation Between an HAE Treating Physician and Patient on the HAE Speaks Podcast

Dr. Andrew Smith and Craig, an individual living with HAE, share insights on recognizing HAE attacks, understanding response strategies, and navigating day-to-day management.
Youth
Through both clinical perspective and personal experience, they explore why timely response matters and how education can empower the HAE community.

Together, they discuss why you don’t have to “tough it out,” how timely action can make a difference, and the importance of understanding your options when managing attacks.

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

March Mindfulness: Strengthening Our Inner Game

This month, we’re trading March Madness for March Mindfulness. Living with HAE takes resilience. While we can’t always control when a flare happens, we can build habits to support our mental and emotional well-being.

Try creating your own “Final Four” for March
  • Deep Breathing
  • Gratitude journaling
  • Gentle Movement or intentional rest
  • Connecting with others who understand through an HAEA CARE Group
Small steps, Steady support, Stronger together

Upcoming HAEA CARE Groups
  • 1st Wednesday of the month at 7:30 PM ET / 4:30 PM PT
  • 2nd Thursday of the month at 11:00 AM ET / 8:00 AM PT
  • 3rd Tuesday of the month 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.
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 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 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.

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.

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 Food and 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.

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.

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.

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.

CSL312_4002 Trial

The US HAEA is currently assisting CSL Behring with recruitment for the SWITCH 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, 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.