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support Families4HAE
Thanks to your past contributions, the US Hereditary Angioedema Association (HAEA) has been able to offer programs for young people that inspire, motivate, and engage the next generation of HAE leaders. Your generous commitment supports Youth Programs that ensure a bright future for HAE advocacy, awareness, and education.

All funds raised will go directly towards the following youth programs:
  • HAEA Youth Advocacy Program, which teaches young people with HAE how to engage with elected representatives and advocate for themselves and the needs of the HAE community,
  • The Pam King HAEA Scholarship Program, which assists young people with HAE to pursue higher education through academic achievement,
  • HAEA Social Media Internship Program, that provides young people with HAE and their siblings the opportunity to learn professional skills while being active members of the HAEA community, and much more!
Your charitable donation of $20, $50, $100, or more, will empower the next generation of HAEA leaders.

 Click HERE to make a difference 

Or send a check to:
Hereditary Angioedema Association
10560 Main Street Suite PS40
Fairfax City, VA 22030
*Please write “Families for HAE” in the memo!*

open enrollment
Don’t miss the Insurance Open Enrollment dates!

Have you taken the time to evaluate which health insurance option best fits your specific needs? The HAEA Health Team is available to help you navigate the selection process and find the most suitable plan.

Please reach out to your HAEA Health Team for assistance in your insurance research, review, and selection process.

The HAEA Health Team is always here for you! Please reach out to us at 866-798-5598 for assistance with: 1) insurance issues, 2) finding an HAE expert physician, 3) updating your member information, 4) joining a virtual support group, or 5) HAE-related questions.

open enrollment
Tune in to the UCA Coverage and Access Forum TODAY!

This virtual event will run from 1:00 PM ET - 3:30 PM ET. This is your opportunity to hear what the HAEA is doing to protect your access to medicines and how you can get involved!

Watch the webinar here: https://haea.zoom.us/j/86866600005

For more information, contact Jim Romano at jromano@careandcureparnters.com. We look forward to seeing you there!

Happy National Caregivers Month!

Throughout the month of November, the HAEA will be recognizing caregivers within the HAE community!

“When I started having daily attacks, Tim was there for me every step of the way. He works to keep me calm and attack free. I’d be lost without his support.” - Kirby B., Individual with HAE

Do you have a caregiver in your life you would like to recognize? Let us know by clicking the link here!

For more information, please contact HAE Advocate, Lisa Facciolla, at lisa@haea.org.

Community Blog
“I don’t feel defeated anymore or that my glass is half empty. I’ve decided to look at my glass as half full and am able to find ways to fill it up.”

We encourage you to read the latest HAEA Community Blog Article, Coping with HAE: Looking at My Glass Half Full, Rather Than Half Empty, where HAEA Community Member, Katrina, describes her HAE journey.

Access the HAEA Community Blog today and read the rest of Katrina’s story HERE!

Would you like to share a unique story or opinion about your HAE? The HAEA Community Blog is the perfect venue to share your story in your own words with other members of the HAE community. You can share your story HERE!

Newsletter icon Podcasts
HAE Speaks Podcast

HAE Speaks Podcast HAE Speaks Podcast - Episode 31: In this episode of the HAE Speaks podcast, Jess talks about the importance of advocacy and how you can get involved.

 Listen Now! 

Do you have a topic, question, or idea that you would like us to cover? Send your suggestion to Mike Mallory at mikemallory@haea.org.

#BeyondHAE Youth Podcast - Ally’s HAE Journey

Youth Podcast series Tune in and listen as Ally dives deep into the ups and downs of her personal HAE journey. She describes how getting involved in the HAEA youth community and advocating for the condition has impacted her life and helped her to feel more comfortable with her diagnosis.

 Listen to the Podcast here! 

HAE Speaks and #BeyondHAE are available to download on Apple Podcasts, Spotify, or wherever you get your latest podcasts!

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 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.

CSL312 Study

The US HAEA is currently assisting CSL Behring in recruiting people with HAE for the CSL312_3002, a worldwide clinical research study to investigate the safety and effectiveness of Garadacimab, an investigational subcutaneous medication given once a month to prevent Hereditary Angioedema (HAE) attacks. In this study, doctors will be evaluating the long term use of Garadacimab.

The trial is currently fully recruited for adult participants, however, a few more adolescent participants (ages 12 - 17) are needed to meet the required numbers.

CSL312_3002 is an open label study with no placebo phase required, which means that all participants will receive Garadacimab for at least one year.

The OASIS Study

The US HAEA is currently assisting IONIS in recruiting people with HAE for the OASIS-HAE study, a Phase 3 worldwide placebo-controlled trial, which aims to determine whether its study drug (called donidalorsen) is safe and effective at reducing or preventing HAE attacks.

Participants may be eligible to participate in an open-label extension study at the end of the OASIS-HAE study, where all participants receive donidalorsen.

To qualify for the OASIS-HAE study, participants must be 12 years of age or older with a documented diagnosis of HAE. Participants must experience at least two attacks during the screening period, and have access to, and the ability to, use at least one or more acute medications to treat HAE attacks.


The US HAEA is currently assisting Kalvista in recruiting people with HAE for the KONFIDENT study, a Phase 3 worldwide placebo-controlled trial where doctors are studying two different doses of KVD 900-301 to assess which one may work best as a safe on-demand treatment for HAE attacks.

To qualify for the KONFIDENT study, participants must be 12 years of age or older; diagnosed with HAE type I or II; have access to an on-demand medication to use for HAE attacks; and be willing to use a study-approved method of birth control during the study.


The US HAEA is currently assisting BioMarin in recruiting people with HAE for the HAERMONY1 study, an investigational gene therapy called BMN 331 to improve HAE symptoms in adults 18 years of age and older diagnosed with HAE due to C1-INH deficiency.

To qualify for the HAERMONY
1 study, participants must be 18 years of age or older; diagnosed with HAE due to C1-INH deficiency; have 6 months of a continuous prophylaxis or on-demand treatment regimen (prior to study enrollment); and a documented attack frequency of at least 1 attack per month on average.
*Additional study requirements apply.

For those who qualify, participation lasts about 5 years after receiving the study drug. There are weekly and monthly visits during the first year. After the first year, the visits occur every three or every six months.

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.

HAEA Events Calendar HAEA Events Calendar

Tuesday, November 15, 2022, 6:30 PM ET
  • HAEA Meet & Greet (VIRTUAL)


Thursday, November 17, 2022, 7:00 PM ET
  • HAEA Treatment Education Series Webinar: Intimacy and HAE. Let’s talk about it. (VIRTUAL)


Tuesday, December 06, 2022, 6:30 ET
  • HAEA Meet & Greet (VIRTUAL)



10560 Main Street, Suite PS40
Fairfax City, VA 22030

(877) 839-4232

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 © (2022) 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.