US Hereditary Angioedema Association


IN THIS ISSUE
Join Us for the 2025 US HAEA National Summit: Registration is Open! Apply for an HAEA College Scholarship! #Families4HAE: Thank You for Empowering the Next Generation of Leaders Start the New Year with New Connections: Join the Brady Club Pen Pal Program!	#BeyondHAE Podcast: Meet the HAEA’s Youth Leadership Council Focus on You with the HAEA CARE Groups Clinical Trial Updates Social Media Snapshots

2025 Summit

Join Us for the 2025 US HAEA National Summit: Registration is Open!

The 2025 US HAEA National Summit is heading to Baltimore, MD, and we want YOU to be part of this extraordinary event!

As always, travel grants are available to cover transportation and accommodations.

Why Attend?

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 5-12, 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!

Apply for an HAEA College Scholarship!

Are you planning to attend a college or university in the Fall of 2025? 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 visit https://www.haea.org/pages/p/youth_resources.

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.

Families4HAE

#Families4HAE: Thank You for Empowering the Next Generation of Leaders

Thank you to everyone who supported the #Families4HAE fundraiser! Because of your generosity, we’ve taken a significant step toward making a difference in the lives of families affected by HAE.

Your support guarantees that current and future generations will benefit from the HAEA's youth programs. Together, we can create a world where HAE youth have the resources and support they need to thrive.

Start the New Year with New Connections: Join the Brady Club Pen Pal Program!

Start the new year by helping your child connect with a new friend in the HAE community! The Brady Club Pen Pal Program is designed to foster friendships and build supportive networks for children affected by HAE and their siblings. Let’s work together to create meaningful connections that bring joy and understanding to young people affected by HAE.

What is the Brady Club Pen Pal Program?
The Brady Club Pen Pal Program is a unique initiative for children aged 7 to 12. It’s a wonderful opportunity for kids to meet others who share similar experiences, build lasting friendships, and support one another as part of a special HAE community.

We’re excited to welcome your family to the Brady Club Pen Pal Program. Let’s make 2025 a year of connection and joy for our incredible HAE Kids!

Learn More HERE!

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

New Year, New Focus on You!

The new year is a good time to focus on you. Taking time to set goals, resolutions or just refocusing can be helpful. It can be frustrating if we don’t meet all of our goals, so it is important to start small. Taking 5 minutes for your personal self-care everyday can make a big change in your mental outlook.

Joining one of the HAEA CARE Groups is a great way to connect with others, and oftentimes we can get self-care suggestions from others in the group. We would be happy to have you join us.

The HAEA CARE Groups meet:

1st Wednesday of the month at 7:30 pm (ET) / 4:30 pm (PT)
2nd Thursday of the month at 11:00 am (ET) / 8:00 am (PT)
3rd Tuesday of the month at 10:00 pm (ET) / 7:00 pm (PT)

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.

Podcasts

#BeyondHAE Podcast: Meet the HAEA’s Youth Leadership Council

Youth Podcast series

The #BeyondHAE youth-produced podcast kicks off in January 2025 with an exciting series of episodes spotlighting the newest members of the Youth Leadership Council who joined in 2024. With new episodes releasing weekly throughout January and February, listeners will get to know these inspiring young leaders and discover what drives their passion for HAE advocacy.

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

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 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.

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 (1) a physician diagnosed you with HAE Type I or II, (2) you are between the ages of 12 and 75 years old, and (3) you have experience using an approved on-demand therapy to treat HAE attacks. After completing the CHAPTER-3 Study, participants may be eligible to join the open-label extension 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.

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.

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.

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.