US Hereditary Angioedema Association


IN THIS ISSUE
Empowering the HAE Community: Introducing the HAEA Academy! Interested in Learning About Medicare? Are you planning to attend a college or university in the Spring of 2025? Applications for the Spring 2025 HAEA Scholarships will open on August 1st! Celebrating Excellence: Dr. Marc Riedl Appointed as HAE Community Endowed Chair in Angioedema Clinical Excellence	Sanyu Shares “A Day In Her Life as a Young Adult on Preventative Medication” - Listen to the #BeyondHAE Podcast Make Time for Mindfulness with the HAEA CARE Groups Clinical Trial Updates Social Media Snapshots

Empowering the HAE Community: Introducing the HAEA Academy!

We are thrilled to announce the launch of the HAEA Academy - an online platform that offers a range of free online courses aimed at supporting HAEA friends at every stage of their HAE journey.

Enroll in the following free courses on the HAEA Academy:

HAE TrackR App: Learn how to use this valuable tool helps you to easily track and manage your HAE.
HAEA Shared Decision-Making Tool: Discover how this tool facilitates open communication and collaboration with your HAE care team when considering treatment options.
Clinical Trials: Explore the importance of clinical trials and how you can help to advance the next generation of promising HAE treatment options.

Enrolling is easy – simply click on the link HERE to get started!

Interested in Learning About Medicare?

Save the Date! HAEA Webinar - Medicare 101: Essentials You Need to Know!

Date: Thursday, August 1st, 2024
Guest Speaker: Jerilyn Arneson, PharmD, BCOP
Time: 7:00 PM ET / 4:00 PM PT

Are you considering enrolling in Medicare or a Medicare Advantage plan? Do you have questions regarding whether your HAE treatment plan will be covered under Medicare?

Join us for an informational webinar to discuss (1) the important decisions HAE friends must make when it comes to Medicare enrollment, and (2) new changes that will go into effect in 2025. Now, before open enrollment begins this fall, is the time to ask questions and assess all your options.

Link Webinar: https://haea.zoom.us/j/88418298209
Phone: +1 305 224 1968 (Webinar ID: 884 1829 8209)

We look forward to having your family join this wonderful program. Together, we can make a difference in the lives of kids affected by HAE.

Register for the webinar here!
The HAEA Health Team is always here for you! Please reach out to us at 866-798-5598 for assistance with: 1) insurance issues, 2) finding an HAE expert physician, 3) updating your member information, 4) joining a virtual support group, or 5) an HAE-related question.

Are you planning to attend a college or university in the Spring of 2025? Applications for the Spring 2025 HAEA Scholarships will open on August 1st!

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.

Celebrating Excellence: Dr. Marc Riedl Appointed as HAE Community Endowed Chair in Angioedema Clinical Excellence

Annual Report

The HAEA is excited to announce that the University of California Chancellor has named our own Dr. Marc Riedl as the HAE Community Endowed Chair in Angioedema Clinical Excellence. Many of us know Dr. Riedl as the a Professor of Medicine at UCSD, Clinical Director of the US HAEA Angioedema Center, and member of the US HAEA Medical Advisory Board. The selection for this prestigious role reflects Dr. Riedl's remarkable dedication and achievements in angeioedema research and clinical care. His position as Endowed Chair will enable continued leading-edge efforts to advance angioedema clinical care to improve the lives of countless people with HAE and their families.

Congratulations Dr. Riedl on this well-deserved honor!

Podcasts

Sanyu Shares “A Day In Her Life as a Young Adult on Preventative Medication” - Listen to the #BeyondHAE Podcast”

Youth Podcast series

Check out the latest #BeyondHAE podcast episode hosted by Kobe, featuring special guest Sanyu! Diagnosed with HAE as a child, Sanyu shares the challenges she faced growing up with the condition, her experience participating in a clinical trial, and how she now manages her life as a young adult on preventative medication.

Listen to the Podcast here!

#BeyondHAE is available to download on Apple Podcasts, Spotify, or wherever you get your latest podcasts!

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

HAEA CARE Groups are virtual group meetings that offer opportunities for our community to share ideas and support one another. If you’re interested in seeing how others in the HAE community practice mindfulness, join us for the July HAEA CARE Groups meetings and check out “Episode 39: The Importance of Mindfulness" from the HAE Speaks podcast series.

Mindfulness can improve our connection with others, calm anxiety, and help us cope better with stress. When we can fully present in a moment, we can build resilience that lasts beyond the current situation.

If you’d like to get started with mindfulness, a great way is to build it into your current routine. Take a moment for yourself and let yourself breathe. While you can’t live a totally stress-free life you can use tools to lessen the impact of stress.

Upcoming HAEA CARE Groups

August topic: Relaxation tips and tricks.
Dates:

Wednesday, August 7, 2024 - 7:30 PM ET / 4:30 PM PT
Thursday, August 15, 2024 - 11:00 AM ET / 8:00 AM PT
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

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.

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.

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.