We will Announce the 2025 US HAEA National Summit Travel Grant Winners Next Week! Keep An Eye on your Email

HAEA friends who have won the US HAEA National Summit travel grant lottery will be notified next week via email.

For those waitlisted, travel grants may become available if a recipient cancels or is otherwise unable to attend the Summit. In such cases, we will reallocate the grants using the lottery and notification processes used in the initial round.

The 2025 Summit registration remains open for anyone wishing to make their own travel arrangements.

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.

Important information:

• Venue: Baltimore Marriott Waterfront, Baltimore, MD.
• REAL ID Requirement: Beginning May 7, 2025, U.S. travelers will need to be REAL ID-compliant to board domestic flights. For more information, visit REAL ID | DHS. Grant recipients must confirm they understand this requirement before flights are booked.
• Medical Notice: Be sure to bring adequate HAE medication and supplies because medical treatement will not be available at the event.

If you have any questions or need additional information, please contact us at (866) 798-5598 or events@haea.org.

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 Summit!

Click here to register today!

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HAEA Grassroots Advocacy Leaders Amplify Our Collective Voice During Rare Disease Week

HAEA Grassroots Advocacy leaders celebrated Rare Disease Week by participating in the Everylife RDLA conference that took place in Washington, DC. Showcasing the resolve and persistence of the HAE community, our 18 HAEA Grassroots Advocacy Leaders from 14 different states met with over 55 legislative offices during the 2025 Rare Disease Week. Many legislators graciously met with HAEA advocates in-person including Congresswoman Emilia Sykes (D-OH), Congressman Max Miller (R-OH), Congressman Chuck Fleishman (R-TN), Congressman Paul Tonko (D-NY), Senator Marsha Blackburn (R-TN), Senator Eric Schmitt (R-MO), and Senator Cory Booker (D-NJ). With over 1000 rare disease advocates attending this event, we are positive that our voices were heard and made an impact on key decision-makers this year.

To learn more about the US HAEA Advocacy program, you can:

• Join the US HAEA Grassroots Advocacy network,
• Visit the HAEA website,
• Watch the 2025 Welcome to Congress and Legislative Update.

You don’t want to miss this highly informative webinar! View the recording here!

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The HAEA Can 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 HAEA Scholarship for Aspiring Healthcare Professionals, please contact haescholarship@gmail.com.

Apply for the HAEA Scholarships here!

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Your Voice Makes a Difference! Watch the HAEA Welcome to Congress Webinar

If you missed the 2025 Welcome to Congress webinar, you can still learn about this year’s congressional agenda and how it could advance the HAE community’s legislative priorities.

This webinar covers:

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

You don’t want to miss this highly informative webinar! View the recording here!

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Meet Members of Your HAEA Community: Join the 2025 Virtual Meet & Greet!

Are you making the most of the programs and services available to you through the HAEA? Join us for the 2025 Virtual HAEA Meet & Greet—a valuable opportunity to connect with the community, learn about essential support services, and ensure you're getting the most out of everything HAEA has to offer!

This interactive event will feature, special guest and HAEA member, Anita who will share their personal experiences and insights. Don't miss this chance to engage, ask questions, and discover resources that can make a difference in your HAE journey.

Event Details:
Date: March 25, 2025
Time: 7:00 PM ET
Location: Virtual Event
Special Guest: HAEA Member Anita W.

Register today here! Secure your spot and ensure you're maximizing the support available to you. We look forward to seeing you there!

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Spring into Health and Wellness with the HAEA CARE Groups

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.

Key aspects of spring health and wellness:

• Increased outdoor activity: Take advantage of the warmer weather to walk, hike, bike, or play an outside sport.
• Fresh produce diet: Incorporate a variety of fresh fruits and vegetables from local farmers' markets.
• Sunlight exposure: Get regular sun exposure to boost vitamin D levels and improve mood.
• Mental well-being: Embrace the positive energy of spring to improve your mood and focus on mental health practices like mindfulness or meditation.
• Review your HAE checklist: Check in with your doctor if you have not had a visit this year. Keep your medical information updated for upcoming prior authorizations. Check in with your specialty pharmacy to get renewal dates. Don’t wait; be proactive in your therapy renewal process.
• Connect with others: Join an HAEA CARE Group where we encourage and support each other through the ‘changing seasons’ of our lives. These groups are held virtually three times a month via 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

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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Explore the HAEA Academy Travel & Emergency Preparedness!

Are you traveling soon? Are you ready for any unexpected emergencies?

Having a plan for travel and emergencies is critical to ensuring unrestricted access to your HAE medications. Take the HAEA Academy's FREE online course that offers tips to help you plan ahead and ensure you are not caught off guard if the unexpected happens.

Take the free HAEA Academy course today by clicking here!

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Listen to Luke’s HAE Journey: A Letter to My 10-Year-Old Self on the #BeyondHAE Podcast

We’re excited to bring you a brand-new episode of the #BeyondHAE youth-produced podcast! This episode is hosted by 18-year-old Luke, who was diagnosed with HAE at the age of 9.

In this special "Letter to My 10-Year-Old Self" episode, Luke reflects on his diagnosis, the challenges he faced, and how his life has evolved since then. He shares the wisdom he has gained along the way and the lessons he wishes he could have told his younger self.

Join us as Luke takes you on his heartfelt journey and offers advice for those who are newly diagnosed. Don’t miss this inspiring podcast!

Listen to the podcast HERE!

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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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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.