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Dear HAEA Family,

The US HAEA is more committed than ever to the fundamental principle that has always guided us -- helping every HAE friend lead a life that is unhindered by Hereditary Angioedema (HAE). We have made great strides in the past 24 years, but vitally important work remains. Going forward we must protect access to the currently available HAE therapies, while pushing for research that brings even better medicines to our children and future generations.

It has been an active and rewarding year that showcases all that we can achieve when we work as a community. Here are a few 2023 highlights:
  • Over 1,200 HAE friends came together in Orlando, Florida, for the 2023 US HAEA National Summit.
  • Over 300 community members 60 and older participated in a Medicare Survey to better understand their challenges, and identify what resources are needed to help them navigate Medicare decisions moving forward, and
    • 86 HAE friends participated in an HAEA educational webinar that covered what members of our community, 60 years and older, need to know about Medicare Prescription Drug Coverage (Part D).
  • HAEA sponsored an International symposium on HAE with Normal C1-INH. Symposium that gathered over 30 HAE experts from around the globe. We are now working to revise the guidelines for treating and diagnosing HAE with Normal C1-INH, and will publish a manuscript with the findings in 2024.
  • Over 100 students with HAE received a Pam King HAEA Scholarship award.
  • More than 1,150 HAEA friends stepped it up for HAE and raised awareness during the HAE IN-MOTION® events.
  • 969 members are in the Grassroots Advocacy Network: A group of volunteers dedicated to supporting people with HAE through active engagement in public policy issues.
  • Over 350 letters were sent to legislators in support of the Safe Step Act (S. 652, H.R. 2630) and the HELP Copays Act (S. 1375, H.R. 830).
  • The HAEA provided awareness and recruitment assistance for 8 clinical trials for HAE therapies under development.
  • The HAEA published a study (in a prestigious medical journal) highlighting the disturbing and costly effect of health insurance delays and denials as part of our continuing campaign to demonstrate the holistic value of continued access to HAE medicines.

Looking forward to 2024, HAEA friends can expect us to continue offering programs and activities geared toward our longstanding goal - improving the quality of life for everyone in the HAEA community.

Warm regards,

Tony Castaldo
Tony Castaldo

medicare research
Choose the Best Health Insurance Option for You in 2024

If you are seeking health insurance coverage for 2024 under the Affordable Care Act (ACA) and Medicare Advantage, we encourage you to evaluate and compare your options to determine which one is most suitable for you. The HAEA Health Team is available to help you navigate the selection process and find the best option available to you.

Charitable Financial Assistance Programs

Remember to mark your calendar, and re-enroll in the Financial Assistance programs on January 1st, 2024. Even if you are currently on the waitlist, it is required to re-register with the foundation every year. If you have any questions, please feel free to reach out to the HAEA health team at health@haea.org.

ACA (Affordable Care Act):

Open Enrollment period ends on Friday, December 15th, with coverage beginning on January 1, 2024.

If you don’t enroll in a plan by December 15th, you will be unable to get 2024 coverage unless you qualify for a Special Enrollment Period.

Medicare Advantage Open Enrollment Period – January 1st – March 31st each year. If you're enrolled in a Medicare Advantage Plan, you can switch to a different Medicare Advantage Plan or switch to Original Medicare (and join a separate Medicare drug plan) once during this time. Note: You can only switch plans once during this period.

Employer sponsored plans – Each employer sets their enrollment dates, so it is important to review and research the plans offered with your Human Resources department to ensure the plan you choose offers the best coverage for you.

With the holidays fast approaching, it is important to plan ahead to ensure your medications arrive on time during the busy shipping season. Connect with your manufacturer’s patient support team as well as your specialty pharmacy to reorder your medications before the holiday season gets too busy.

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) an HAE-related question.

Congress Recognizes HAE day
Only 3 Weeks Left to Make Your Donation to the #Families4HAE Campaign!

Donate this season to make a real difference in the lives of young people with HAE!

HAE can be painful, disfiguring, and even life-threatening. But with the right support and resources, young people with HAE can lead happy, healthy lives.

The HAEA youth programs help by:
  • Offering educational resources and scholarships that enable young people with HAE to live their best lives;
  • Connecting young people with mentors who offer guidance and support; and,
  • Hosting community events and advocacy training workshops that bring young people with HAE together to learn, connect, and build lasting friendships.
Every donation, no matter how big or small, makes a difference.

Please donate today to transform the lives of young people with HAE.

 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!*

Community Blog
HAEA Community Blog

We all know the insightful conversations, educational information, and unforgettable memories that occur when HAE community members come together and the US HAEA National Summit was no exception. The US HAEA was thrilled to bring the HAEA community together for the first time in 4 years at the 2023 US HAEA National Summit in Orlando, Florida.

Access the HAEA Community Blog and read Reflections from the 2023 US HAEA National Summit by clicking HERE!

Would you like to share a unique story or opinion about your HAE? The HAEA Community Blog is the ideal platform to share your personal story 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 43: Kate is living Beyond HAE

Kate has lived with HAE all of her life but she does not let it control her life. Listen in as Kate shares her amazing feats and living her “dash” life.

 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.

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

HAEA CARE GROUPS (Community, Acceptance, Respect, Empathy)

“Reflective thinking turns experience into insight.” – John C. Maxwell

For the month of December our HAEA CARE Groups will reflect on 2023 to celebrate our personal victories and consider how our experiences can help us continue to grow in the future.

The HAEA CARE Groups are held virtually three times a month through Zoom. Join us in January when we discuss managing stress in the new year.

Upcoming HAEA CARE Groups:
  • Tuesday, December 19, 2023 - 10:00 PM ET / 7:00 PM PT
  • Wednesday, January 3, 2023 - 7:30 PM ET / 4:30 PM PT
These virtual group meetings offer opportunities for our community to share experiences and support others. Interested in joining one of these monthly support groups? Contact the HAEA Health Team for more information by calling 866-798-5598 or emailing an advocate at health@haea.org.

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.


The US HAEA is currently assisting Astria Pharmaceuticals in recruiting people for the ALPHA-STAR trial, a Phase 1 study evaluating a new medicine (STAR-0215) for long acting prevention of HAE attacks. STAR-0215 is delivered subcutaneously once every 3 months or in some cases, even less frequently. This trial is not placebo controlled, so each participant will receive the trial medication.

You may qualify for the ALPHA-STAR study if you are 18 years of age or older and diagnosed with HAE Type I or II, have had at least 4 attacks in the past year, and are not on preventative therapy. Individuals currently on preventative therapy and interested in participating should consult with their physician to discuss the risks and benefits before discontinuing medication.

The OASIS-HAE Plus Study

The US HAEA is currently assisting IONIS in recruiting people with HAE for the OASIS-HAE Plus study.

The OASIS-HAE Plus study is an open-label extension study without placebo, evaluating the safety and effectiveness of an investigational subcutaneous preventive medicine called donidalorsen, which is given once every 4 or 8 weeks. This investigational drug uses a technology called antisense, which targets the kallikrein generating system using messenger RNA to suppress the protein that produces kallikrein.

To qualify for the OASIS-HAE Plus study, participants must be 12 years of age or older with a documented diagnosis of HAE. This study will help researchers learn if the study drug is safe and effective for people with HAE when given over a long-term period. Participants in the OASIS-HAE Plus study are either switching over from a different prophylaxis therapy, or continuing on from another donidalorsen 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 HAERMONY1 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, December 19, 2023 - 10:00 PM ET / 7:00 PM PT
  • Wednesday, January 3, 2023 - 7:30 PM ET / 4:30 PM PT
If you are interested in joining a virtual support group, please reach out to an advocate by calling 866-798-5598 or emailing health@haea.org.

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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 © (2023) 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.