US Hereditary Angioedema Association


IN THIS ISSUE
Honoring HAEA Scholars: Highlights from the HAEA Scholarship Gala Advancing HAE Advocacy for a Better Future Nominate a Young HAE Advocate: Recognize Outstanding Youth Leaders During HAE Youth Advocacy Month Applications for HAEA College Scholarships Are Now Open!	HAE Speaks Podcast: Spotlight on HAEA Grassroots Advocacy Network Regional Leaders Learn More about Relaxation Tips with the HAEA CARE Groups HAEA Treatment Education Series Clinical Trial Updates Social Media Snapshots

Honoring HAEA Scholars: Highlights from the 2024 HAEA Scholarship Gala

Last month’s HAEA Scholarship Gala was an evening to remember, bringing together outstanding scholarship recipients to celebrate their remarkable achievements. Held at the Hyatt Regency Washington on Capitol Hill in Washington, D.C., the Gala celebrated academic achievement and community spirit while reinforcing the HAEA’s commitment to empowering and supporting the next generation of leaders.

The Gala highlighted heartfelt speeches delivered by scholarship recipients who shared personal journeys, challenges, and aspirations for the future. Their stories are a testament to the resilience and determination of the HAEA community.

Congratulations to all the scholarship recipients, and thank you to everyone who made this event a success!

You can watch the full Gala event by clicking HERE!

HAEA Advocates Voice Their Concerns During Capitol Hill Day Visits

On July 15th, over 200 HAEA advocates visited 113 congressional offices on Capitol Hill to deliver a vitally important message requesting action on matters that affect the future of people with HAE and their families. During these meetings, our HAEA volunteer advocates voiced their support for:
• The Safe Step Act (S. 652/H.R. 2630),
• The HELP Copays Act (S. 1375/H.R. 830),
• The Accelerating Kids Access to Care Act (S. 2372/H.R. 4758), and
• Research funding to support new and improved therapies.

HAEA advocates prepared for Capitol Hill Day by participating in an engaging training session where they learned about how to use their stories to influence policymakers.

Thank you to all who attended the HAEA 2024 Capitol Hill Day! Your efforts to inform our elected representatives was well received and promises to have a positive impact on legislation that affects the HAEA community.

You can advance future HAE advocacy efforts by joining the HAEA Grassroots Advocacy Network here!

Nominate a Young HAE Advocate: Recognize Outstanding Youth Leaders During HAE Youth Advocacy Month

Do you know a young person who has made a significant contribution to raising awareness and advocating for HAE? Nominate them for the HAEA Youth Advocacy Achievement League, where we will celebrate these special youth advocates. Nominations are open until August 31, and nominees will be recognized during Youth Advocacy Month in October. Don't miss the chance to honor a deserving young leader!

Requirements:
Nominees must be a member of the US HAEA.
Nominees must be a US resident, living in the United States.
Nominees must be 25 years old or younger to qualify for recognition.

Nominate a Young Advocate HERE!

Applications for HAEA College Scholarships Are Now Open!

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:

Application Period: August 1, 2024 - September 30, 2024
Eligibility: Students with HAE between the ages of 17-30
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 scholarship@haea.org.

Save the Date for the 2024 HAE IN-MOTION® Virtual Event - Step it up for HAE!

We are thrilled to announce the 2024 HAE IN-MOTION® Virtual Challenge Event will run from September 1-30, 2024. This virtual challenge invites our community to walk, run, or ride and log your steps on our OneCause site. It’s a perfect way to integrate awareness for HAE into your daily routine.

Registration opens on September 1st, 2024! Once registered, you'll receive instructions on tracking your activity, uploading photos, and sharing your progress on social media. Plus, you’ll have the chance to win amazing grand prizes!

Grand prizes will be awarded to teams with:

The top overall fundraising total
The most steps/miles completed
The highest recruitment total

Whether you prefer to run, walk, swim, or ride, you can help us reach our goal of 10,000 miles by September 30th and raise vital funds to support HAEA programs and services.

Be sure to use the hashtag #step-it-up-for-hae in your social media posts!

For more information or questions, contact Ianice Viel at ianiceviel@haea.org.

Podcasts

HAE Speaks Podcast: Spotlight on HAEA Grassroots Advocacy Network Regional Leaders

In this month's episode of the HAE Speaks podcast, we shine a spotlight on some of the most passionate and dedicated advocates within the HAEA community – our regional leaders. These HAEA friends play a crucial role in advancing our advocacy efforts, ensuring that every voice is heard and that access to care remains a top priority.

Join us for this inspiring episode as we highlight the remarkable work of a few of our regional leaders, Cedrick, Pamela, and Kate, and the profound impact of advocacy within the HAEA community!

Listen to the episode now by clicking HERE!
HAE Speaks is available to download on Apple Podcasts, Spotify, or wherever you get your latest podcasts!

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

Relaxation Tips and Tricks

HAEA CARE Groups are virtual group meetings that offer opportunities for our community to share ideas and support one another. For the month of August, we will explore what it means to try to relax when life may be complicated by something like HAE.

Sometimes managing a chronic illness can feel like a full-time job. Between appointments with medical professionals, prior authorization renewals, and navigating insurance challenges, individuals with HAE and their caregivers may experience times of extreme stress. While some degree of stress is often inevitable, making time to take care of our emotional well-being can help lessen the impact stress has on our lives.

If you are struggling to cope with the stress in your life, take a moment to reflect on what could be the cause, and explore options that may help you relax. Try to incorporate one activity or idea for self-care in your day-to-day routine, such as meditation, deep breathing exercises like diaphragmatic breathing, and/or going on a walk. It may also be helpful to consider if there are any activities you have committed to, but may not have the time or energy to continue doing. Sometimes reaching out to loved ones or those you trust may be an additional way you can receive support.

Upcoming HAEA CARE Groups

August topic: Relaxation tips and tricks.
Dates:

Tuesday, August 20, 2024 - 10:00 PM ET / 7:00 PM PT

September topic: Self-care September.
Dates:

Wednesday, September 4, 2024 - 7:30 PM ET / 4:30 PM PT
Thursday, September 12, 2024 - 11:00 AM ET / 8:00 AM PT
Tuesday, September 17, 2024 - 10:00 PM ET / 7:00 PM PT

October topic: The Tricks and Treats of HAE.
Dates:

Wednesday, October 2, 2024 - 7:30 PM ET / 4:30 PM PT
Thursday, October 10, 2024 - 11:00 AM ET / 8:00 AM PT
Tuesday, October 15, 2024 - 10:00 PM ET / 7:00 PM PT

November topic: Practicing Gratitude for Your Self-Care.
Dates:

Wednesday, November 6, 2024 - 7:30 PM ET / 4:30 PM PT
Thursday, November 14, 2024 - 11:00 AM ET / 8:00 AM PT
Tuesday, November 19, 2024 - 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.

HAEA Events Calendar

Thursday, August 22nd at 7:00 PM ET / 4:00 PM PT

HAEA Treatment Education Series Webinar: Living with HAE and Preparing for the School Year

Guest Speakers: Andrew Smith, MD, MS and Emily Thornton, RN
Sponsored by: Pharming
Link Webinar: https://haea.zoom.us/j/84833383647
Phone: +1 646 558 8656
Webinar ID: 848 3338 3647
Register here: https://www.facebook.com/share/LvPT13NJPM1whkHF/

HAEA Treatment Education Webinar Brief

We also invite you to watch the on-demand HAEA Treatment Education Webinar Brief: Living with HAE & Discovering Those Moments That Matter, featuring Merve Yilmaz, the Associate Director, HAE Marketing at Pharming, Melanie Powell, Senior Director of Patient Access & Support Services at Pharming, and HAE Patient Advocate, Noah.

WATCH the webinar brief HERE!
HAEA Community Series - New York

Date: Wednesday, August 28, 2024
Time: 6:30 PM ET
Location: The Consulate - Midtown (Restaurant)
44 W 56th St, New York, NY 10019
Register here!

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 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!


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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 © (2024) 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.