Donate to #Families4HAE: Building A Brighter Future for HAEA Youth Starts with Us

Families give children the courage to face Hereditary Angioedema (HAE) each day — and our #Families4HAE community builds on that strength by ensuring every child feels connected, supported, and empowered.

Your donation to the #Families4HAE End-of-Year Fundraiser helps us continue creating meaningful opportunities for children and families affected by HAE where kids can learn, grow, and build lifelong friendships.

Every dollar makes a difference:
$25 provides a child with an HAEA Cares Kit, reminding them they’re not alone.
$100 funds materials for a youth advocacy workshop.
$500 helps a family travel to a national youth event.
$1,000+ sponsors a family’s full Camp Brady experience at The Painted Turtle.

Together, we can make sure no child with HAE grows up feeling alone, and every family feels part of a strong, caring community.

Make your tax-deductible donation today at haea.org and help us build a brighter future for HAEA families everywhere.

Make a Gift to the HAEA Today!

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Open Enrollment Season Is Upon Us: Be Prepared To Understand Your Options

It is important for everyone to take time to research and evaluate your current insurance plan to make sure that it continues to meet your healthcare needs, including coverage of your HAE medications.

When researching your insurance plans, listen to the latest episode of HAE Speaks and make sure you consider the 10 important questions before signing up for your new plan.

If you still have questions after reviewing the information below, the HAEA Health team is here to help you as you navigate the sometimes-confusing insurance open enrollment season. Please contact us via email at health@haea.org or call us at 866-798-5598.

Important Open Enrollment Information:

Medicare Open Enrollment October 15th - December 7th
www.medicare.gov
There are several changes related to Medicare for 2026, so it is important to make an informed decision and choose a plan that will meet your needs.

• Do You Have Questions About Medicare? Explore the HAEA Academy Medicare Basics Course


• Looking to expand your knowledge of Medicare? Dive into the HAEA Academy FREE online course that offers a clear introduction to Medicare including descriptions of its key components – Parts A, B, C, and D. Learn about eligibility, the enrollment process, and valuable resources designed to help individuals with HAE make informed Medicare-related healthcare decisions.


• Take the FREE course today by clicking here.

Affordable Care Act (ACA) Open Enrollment November 1st - December 15th
www.healthcare.gov
Many of the ACA insurance plans cover HAE medications, making them a good option to investigate if you need to make a change in your insurance coverage. As with any insurance plan, it is important to research specific plans to ensure you will have the coverage needed. If you enroll prior to December 15th, your coverage will begin on January 1st, 2026.

Employer Healthcare Plans - Check with your employer for specific enrollment dates and plan options, including medication coverage. It is important to research your plan even if you are with the same employer. There can be changes in formularies, so your HAE medication or provider may not be in your plan for 2026. Evaluating your health insurance options and working with the HR department at your employer can be helpful in determining the plan that will work best for you.

Financial Assistance If you are receiving financial assistance from one of the foundations like The Assistance Fund (TAF) or Accessia Health, it is important that you check re-enrollment dates, so you don’t miss any deadlines for financial assistance in 2026.

The Assistance Fund https://tafcares.org/
Accessia Health https://accessiahealth.org/

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Encourage Your Child to Develop Critical Skills and Connect with Others by Applying to Two Exciting HAEA Youth Leadership Programs

The HAEA is now accepting applications for the 2026 Youth Leadership Council (YLC) and Social Media Internship programs, two exciting opportunities designed to help young people (diagnosed youth, caregivers, and siblings) build confidence, develop leadership skills, and connect with others in the HAEA community.

• Youth Leadership Council (YLC): Open to HAEA youth ages 12–18
• Social Media Internship: Open to young adults ages 17–25

These programs offer:

• Attend an inspiring in-person leadership training in Washington, DC
• Gain professional development through creative, team-based projects
• Take part in advocacy and travel opportunities with the HAEA
• Join a supportive community of peers who share their passion for making a difference

If your child is ready to grow, lead, and make an impact, we encourage them to apply!

Deadline to apply: November 14
https://www.haea.org/autoforms/f/404

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HAE Speaks Podcast: 10 Must-Ask Insurance Open Season Questions for HAE

In this episode, HAEA Nurse Case Managers, Troyce Venturella and Mandy Granat, share their 10 must-ask insurance open season questions for people living with HAE. Learn how to better understand your coverage, prepare for renewals, and advocate for the care you need.

Navigating insurance can be challenging, but you don’t have to do it alone!

Listen to the episode by clicking HERE!

#BeyondHAE Youth Produced Podcast: High-Fiving Palm Trees

In this episode of the #BeyondHAE podcast, host Zach shares his powerful journey growing up with Hereditary Angioedema (HAE). His story chronicles his experience dealing with an especially challenging attack after high-fiving a palm tree, learning self-infusions as a teen, and finally discovering a sense of freedom through modern treatments. Sponsored by KalVista Pharmaceuticals, this episode takes listeners inside Zach’s experience with the oral on-demand treatment EKTERLY®, which transformed the way he manages HAE. Through resilience, advocacy, and hope, Zach’s story offers inspiration to anyone navigating life with a rare disease.

Listen to the episode by clicking HERE!

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HAEA Community Blog

Breaking the Cycle: Finding Relief From Hereditary Angioedema

Julie, an individual with HAE, highlights her lifelong struggle with unpredictable and painful HAE attacks that impacted every part of her life. After finding an effective preventive treatment, she regained her freedom, confidence, and hope, showing that life with HAE can be stable, fulfilling, and full of possibilities.

Read the Blog HERE!

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Create a True Partnership with your Physician To Better Manage Your HAE

We personally invite you to use an exciting (and free!) resource to prepare for your next HAE appointment: The HAEA Shared Decision Making Tool (HAEA SDM).

By answering a series of questions, HAEA SDM summarizes your:

• Recent experience with HAE,
• Current treatments, and
• Preferences and what matters most to you when considering an HAE treatment.

This information is compiled into a downloadable one-page summary overview that serves as a basis for a more collaborative treatment-oriented discussion with your HAE physician.

HAEA SDM will help you and your doctor create a treatment plan that truly fits you.

Access the HAEA SDM Tool HERE!
If you have any questions, need assistance using the tool, or would like to share feedback, please contact the HAEA Health Team at health@haea.org.

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Learn About the Latest HAE Medicines by Viewing the HAEA Treatment Education Series Webinar

• Topic: ADX-324 (siRNA): Advancing HAE Care; Next Generation of Treatments
• Guest Speakers: Marc Riedl, MD, MS, Professor of Medicine and Clinical Director of the U.S. HAEA Angioedema Center, University of California, San Diego (UCSD), and Masako Murai, MD, PhD, Vice President of Clinical Development at ADARx Pharmaceuticals
• Sponsored by: ADARx Pharmaceuticals

Watch the Webinar By Clicking HERE!

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

The holiday season is a time for friends, family, and exciting celebrations. For those living with HAE, with the right strategies and preparation, the season will remain merry and bright!

It’s essential to prioritize your health and practice self-care to avoid flare-ups or complications. Take time to plan, set realistic goals for your body, and allow yourself to rest when needed

1. Staying Active – can reduce stress and boost energy, even short walks or stretching can help.
2. Stick to Your Medication Schedule – don’t delay or skip doses, it is essential to stay on track during increased stressful times. Always schedule your reorder ahead to prevent possible delays in shipping during the holiday season.

3. Monitor Your Symptoms – The holidays can present increased stress with possible travel, increased activities, and changes in meals. Keep a log of your attacks, monitor symptoms, and track possible triggers (all of this information is easily collected by using the HAE TrackR app) . Keep current on your acute (rescue) medications, treating early and communicating with your healthcare team.

4. Prioritize Rest and Sleep – Quality sleep is crucial in managing your health during the busy holiday season. Lack of sleep can increase your stress, decreasing your positive time spent with family and friends.

5. Connect with others in a safe space – Consider joining one of the HAEA CARE Groups Meetings via zoom.

1st Wednesday of the month at 7:30pm (est) / 4:30pm (pst)

2nd Thursday of the month at 11:00am (est) / 8:00am (pst)

3rd Tuesday of the month at 10:00pm (est) / 7:00pm (pst)

Interested in joining one of these monthly groups? Contact the HAEA Health Team for more information by calling 866-798-5598 or emailing an advocate at health@haea.org.

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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.

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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.

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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 12 years of age or older, and have access, ability, and experience using standard-of-care on‑demand HAE treatment to manage HAE attack. 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.

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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 Federal 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.

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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.

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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.

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.

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Social Media Snapshots

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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.