HAEA-Initiated Global Consensus Paper on HAE with Normal C1-Inhibitor Reflects Ongoing Intensive Efforts to Help These Important Members of Our Community

The US HAEA in conjunction with HAE International brought together over 30 International HAE experts to prepare an up to date consensus paper on the diagnosis and treatment of HAE with Normal C1-Inhibitor (HAE-nC1INH). The study reflects our ongoing efforts to help these very important members of our community and stresses key points such as:

• HAE-nC1INH is a serious condition that can be associated with severe illness and even death, and
• a diagnosis of HAE-nC1INH made by an expert physician (even without an identified genetic mutation) is sufficient to warrant treatment.

This landmark study appears in the most recent edition of the prestigious medical journal, Clinical Reviews in Allergy & Immunology. It can be viewed for free by clicking HERE.

Please stay tuned for information on other exciting ongoing HAEA research projects that are all designed to help improve the health and well-being of everyone in our community.

---

Celebrate hae day :-) 2025 – Make a Lasting Impact!

hae day :-), recognized every May 16th, is a powerful reminder of what we can achieve when we come together as a community. Established through Senate Resolution 286, this day has grown into a global movement dedicated to raising awareness, advancing education, and advocating for improved treatments for HAE.

As we approach hae day :-), the HAEA community reaffirms its commitment to progress—ensuring that individuals with HAE continue to receive the support, education, and medical advancements they deserve.

This year, we will be mailing out a special hae day :-) poster to US HAEA members and encourage everyone to spread awareness by:

1. Snapping a photo with their poster,
2. Tagging the US HAEA when they post their photo to social media, and
3. Joining Team USA for HAEi’s global be #active4HAE campaign!
4. Give back and make a lasting impact by donating to the HAEA. Your generosity helps fund essential programs that improve lives, expand research, and empower the HAE community.

Make a Difference Today and Donate Here!

---

Offer Your Healthcare Professional an Opportunity to Interact with the Country’s Leading HAE Experts

Invite Your HAE Care Team to the Professional-Scientific Track at the 2025 US HAEA National Summit!

The 2025 US HAEA National Summit provides an incredible opportunity for healthcare professionals to engage with the country’s leading HAE physician/scientists and stay informed on the latest advances in HAE research and clinical care.

A limited number of professional-scientific track grants (to cover travel and lodging) are still available for healthcare professionals.

We encourage all HAE community members to invite their treating physicians and healthcare teams to attend this impactful event. Please direct anyone you invite to register and request a travel grant by using the following link: Healthcare professionals can register here!

Summit Healthcare Professional Registration Deadline: April 14, 2025

---

Is Your Health Insurance Denying Your HAE Medications? The HAEA Health Team Can Help!

Insurers often issue a denial notification when HAE medications are ordered, which understandably causes frustration and stress. The HAEA Health Team is here to help you navigate through a process that can seem overwhelming.

Some denials result from administrative issues, such as missing documentation or an incorrectly placed signature. Whatever the reason for your denial, we can work with you on an appeal and offer resources for possible temporary access to medication.

For assistance, please contact us at health@haea.org or 866-798-5598.

---

A Youth Leader’s Perspective While Raising HAE Awareness on Capitol Hill: Read the HAEA Community Blog

In this month’s featured HAEA Community Blog, HAEA Youth Community member Zach shares his experience on Capitol Hill during Rare Disease Week. Zach discusses his interactions with legislators while advocating for increased awareness and support for people living with HAE.

Zach’s story highlights the power of youth advocacy and the importance of making HAE voices heard at the national level!

Read From Tennessee to DC: Raising HAE Awareness on Capitol Hill by clicking HERE!

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

---

Watch the New On-Demand HAEA Treatment Education Series Webinar! Navigating Complexities of HAE Caregiving with Dr. Marc Riedl

We invite you to watch the now fully on-demand HAEA Treatment Education Series Webinar!

• Topic: Navigating the Complexities of HAE Caregiving
• Guest Speaker: Marc Riedl, MD, MS
• Sponsored by: CSL Behring

Tune in as Dr. Riedl, along with two HAE caregivers, address the emotional and logistical challenges of caring for someone with HAE, as well as provide advice for building a strong support system for yourself and your loved ones.

You can access the webinar by clicking HERE!

---

Listen to the HAE Speaks Podcast: Legislative Series - Insights from Two Grassroots Leaders

In this month’s episode of the HAE Speaks Podcast, we hear from Craig, a person with HAE, and his wife and caregiver, Melissa. They reflect on their powerful experiences during Rare Disease Week in Washington, D.C.

Tune in to hear how their partnership, perseverance, and passion are helping to raise awareness, influence change, and bring the voice of the HAE community to policymakers on Capitol Hill.

Listen to the episode now by clicking HERE!

---

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

The arrival of spring, with its warmer weather, flowers beginning to bloom, and longer days, presents a perfect opportunity to revitalize your health. It’s a great time to increase physical activity outdoors, eat fresh seasonal produce, and generally embrace a more active and mindful lifestyle; think of it as "spring cleaning" your health.

Manage Stress Effectively with the HAEA CARE Groups

Stress is a well-documented trigger for HAE swelling. While stress is often associated with negative experiences, it is important to recognize that positive events—such as weddings, birthdays, holidays, or long-anticipated trips—can also contribute to stress levels. Effectively managing both positive and negative stress may help reduce the frequency of HAE swelling episodes while also enhancing overall well-being.

Everyone responds to stress differently, so creating an individual plan to manage your stress is important.

• Take care of your body:
• Exercise: Physical activity releases endorphins that can help counteract stress hormones.
• Eating a healthy diet: Try to include more fresh fruits and vegetables in your diet and cut back on caffeine, fatty foods, and sugar.
• Improve your sleep habits: Allow your body time to recharge.
• Take time to relax:
• Laugh more: Laughing boosts your mood and reduces the stress hormone cortisol.
• Calm your mind: Meditation and deep breathing exercises can lower your heart rate.
• Take care of yourself:
• Keep a journal: Write down the day’s accomplishments or list three things you’re grateful for.
• Make “me time”: Try to do one thing a day that is just for you, like reading a book, working on a hobby, or getting together with friends.
• Take control: Try planning your day the night before so you know what to expect. Give yourself permission to say no to other people’s requests.
• Take time to connect with others:
• Join one of the HAEA CARE Groups. We meet three times a month, providing an opportunity for patients and caregivers to connect and support each other.

Join us for some great discussions during our monthly HAEA CARE Groups where HAEA friends share experiences and support each other. We hope you can join us. Please reach out to the health team at 866-798-5598 or emailing an advocate at health@haea.org.

The HAEA CARE Groups are held virtually three times a month through Zoom.

Upcoming HAEA CARE Group meeting times:

• 1st Wednesday of the month - 7:30 PM ET / 4:30 PM PT
• 2nd Thursday of the month - 11:00 AM ET / 8:00 AM PT
• 3rd Tuesday of the month - 10:00 PM ET / 7:00 PM PT

---

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.

---

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.

---

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 between the ages of 12 and 75 years old, and have experience using standard-of-care treatment to manage on-demand treatment for HAE attacks. 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.

---

The HAELO Study

The US HAEA is currently assisting Intellia in recruiting people with HAE for the HAELO study.

The HAELO study is a phase 3 study to evaluate the efficacy and safety of NTLA-2002 compared to placebo in adults with HAE. This investigational drug uses CRISPR gene editing to potentially treat genetic diseases.

To qualify for the HAELO study, participants must be 18 years of age or older with a clinical history consistent with HAE Type 1 or Type 2. This study will help researchers learn if the study drug is safe and effective for people with HAE when compared with placebo.

---

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.

---

KONFIDENT-KID Study

The US HAEA is currently assisting Kalvista in recruiting children ages 2-11 with HAE for the KONFIDENT-KID study, a worldwide clinical research study to investigate the efficacy of an investigational oral drug (sebetralstat) to relieve the symptoms of Hereditary Angioedema (HAE) attacks in pediatric patients.

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.

---

Social Media Snapshots

Don’t miss the latest HAEA news and announcements, connect with us on social media!


Update your HAEA membership information HERE!

---

10560 Main Street, Suite PS40 Fairfax City, VA 22030		CONTACT AN HAE ADVOCATE: (866) 798-5598
DONATE		JOIN HAEA
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.