Don’t Miss Your Chance to Attend the 20225 US HAEA National Summit! Apply Today for a Travel Grant – Less Than Two Weeks Left!

The 2025 US HAEA National Summit is coming to Baltimore, MD, and we want YOU to be part of this unforgettable experience!

Travel Grants Available – Apply Today!

Register today and apply for a travel grant to cover transportation and accommodation costs. Grants will be awarded through a lottery system.

• Deadline to Apply for a Travel Grant: February 28, 2025
• Notification: Recipients will be notified via email the week of March 17, 2025.
• Second Drawing: If grants remain, a second drawing will be announced.

Why Attend?

• It’s a lot of fun: Enjoy a Baltimore harbor sightseeing boat ride, great food, and exciting entertainment at the Summit dinner.
• Connect: Build meaningful relationships with HAEA friends and community members.
• Learn: Discover the latest advancements in HAE therapies.
• Advocate: Be part of the movement to protect access to life-changing HAE medicines.

Special Programming Includes:

• Teens and Young Adults ages 12-25,
• Kids ages 6-11, and
• Healthcare professionals and researchers (feel free to invite anyone from your care team!)

Apply for a Travel Grant!
Register today and apply for a travel grant to cover transportation and accommodation costs. Grants will be awarded through a lottery system.

Let's get together and embrace a brighter future for the HAEA community. We look forward to seeing you in Baltimore on July 10-13 for the 2025 US HAEA National Summit!

Click here to secure your spot!

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Let the HAEA Help You Afford College Education: Apply for an HAEA College Scholarship

The HAEA helps students with a confirmed HAE diagnosis pursue their academic goals by reducing the financial burden associated with higher education.

The HAEA has two scholarships available to people with HAE: the Pam King HAEA Scholarship and the HAEA Scholarship for Aspiring Healthcare Professionals. To read more about the details of each scholarship, please click here.

Key Information:

• Fall 2025 Application Period: February 1st - March 31st, 2025
• Eligibility: Students with a confirmed HAE diagnosis
• Membership Requirement: Scholarship applicants must be members of the US HAEA

If you have any questions about the Pam King HAEA Scholarship or the HAE Scholarship for Aspiring Healthcare Professionals, please contact haescholarship@gmail.com.

Apply for the HAEA Scholarships here!

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Influence Legislation Affecting the HAE Community: Register for the HAEA Welcome to Congress Webinar

Join us on Tuesday, March 11th, at 6:00 PM ET / 3:00 PM PT for the Welcome to Congress Webinar! Learn about this year’s congressional agenda and how it could advance the HAE community’s legislative priorities.

This webinar will cover:

• Congress's legislative priorities,
• Issues that will impact the HAE community in 2025, and
• What you can do to participate in the HAEA volunteer grassroots advocacy program.

You don’t want to miss this highly informative webinar! Register today to secure your spot!

Register here to secure your spot!

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

February - Heart Health Awareness Month.
Our Heart Health is important all year - A healthy heart is vital for our wellbeing and a key component of our HAE care plan. Diet and exercise promote heart and mental health. Meditation and self care also promote a healthy lifestyle and heart health. Even small changes in your routine can have great benefits.

We have some great discussions during our monthly HAEA CARE Group times to support each other. We hope you can join us. Please reach out to the health team at 866-798–5598 or health@haea.org. We are on this journey together.

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

These virtual group meetings offer opportunities for our community to share experiences and support each other. 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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The RAPIDe-3 Trial

The US HAEA is currently assisting Pharvaris in recruiting people for the RAPIDe-3 trial, a Phase 3 worldwide clinical research study to investigate the safety and effectiveness of an investigational oral drug (deucrictibant) to relieve the symptoms of Hereditary Angioedema (HAE) attacks. This is a placebo-controlled study, and if you choose to participate you will take capsules to treat a total of two HAE attacks. The use of an approved on-demand medication to treat acute attacks is permitted and will be provided at no cost.

You may qualify for the RAPIDe-3 trial if you are diagnosed with HAE Type I or II and be between the ages of 12 and 75 years old, with at least two attacks in the past three months and have had experience using standard-of-care treatment to manage on-demand treatment for HAE attacks. After completing the RAPIDe-3 Study, participants may be eligible to join an open-label extension (OLE) study, and continue receiving deucrictibant to treat acute 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 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.

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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.

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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.

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CSL312_3003 Pediatric Study

The US HAEA is currently assisting CSL Behring in recruiting children ages 2-11 with HAE for the CSL312_3003 study, which will investigate the safety and efficacy of subcutaneous CSL312 for prophylactic treatment of pediatric-age individuals with HAE.

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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 adolescent 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.

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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.