US Hereditary Angioedema Association


IN THIS ISSUE
In Memoriam - Marcus Maurer, MD (1966-2024) Breakthrough HAEA-Initiated Research on Quality of Life Published in a Prestigious Medical Journal Step Up for HAE: Join the 2024 HAE IN-MOTION® Virtual Challenge Today! Building Connections: Highlights from the NYC HAEA Community Connections Dinner Take Care of Your Mental Health this Month with the HAEA CARES Groups	Listen to the HAE Speaks Podcast: Ahead of the Swell - Uncovering the Target That Could Stop Attacks Listen to the #BeyondHAE Podcast: A Day in the Life of Zach Read the HAEA Community Blog: Going Back to School With HAE HAEA Events Calendar Clinical Trial Updates Social Media Snapshots

In Memoriam - Marcus Maurer, MD (1966-2024)

We are deeply saddened by the untimely passing of Professor Marcus Maurer (1966-2024), a visionary in the fields of angioedema and urticaria. His passion, leadership, and dedication were unmatched, and his work continues to impact people with HAE and physicians around the world.

As the founder of the GA²LEN & HAEi network of Angioedema Centers of Reference and Excellence (ACARE), Professor Maurer helped establish a global network of 102 centers, fostering collaboration between patients and physicians, and advancing care and research.

His legacy includes over 850 published articles and 55 books that have significantly shaped the understanding and treatment of angioedema. Marcus had an extraordinary ability to inspire collaboration among clinicians, researchers, and advocates, and his contributions will continue to enhance lives for years to come.

On behalf of the HAEA community, we extend our heartfelt condolences to his family, friends, and colleagues during this difficult time. His remarkable work and dedication to advancing care in allergy and immunology will never be forgotten.

With heartfelt sympathy,
The US HAEA Team

Breakthrough HAEA-Initiated Research on Quality of Life Published in a Prestigious Medical Journal

An HAEA-initiated research project that included well over 500 HAEA friends has resulted in a ground-breaking HAE-specific tool that measures Quality of Life for people with HAE in the United States. The prestigious medical journal--Annals of Allergy, Asthma, and Immunology--recognized the value of this unique research by recently publishing the article we prepared that documents the development and testing of this groundbreaking tool. The study can be viewed by clicking HERE.

Our Quality of Life tool is designed to benefit our community by helping physicians and researchers:

Accurately captures the way HAE affects the everyday life of individuals and families,
Demonstrate (to health insurers and others) the value of life-changing improvements in health and quality of life that results from modern HAE medicines, and
Avoids the under-reporting of challenges faced by people with HAE in the US that is seen in other currently available Quality of Life tools.

Please stay tuned for information on other exciting ongoing HAEA research projects that are all designed to help improve the health and well being of everyone in our community.

Step It Up for HAE: Join the 2024 HAE IN-MOTION® Virtual Challenge Today!

Get ready to step it up for HAE! The 2024 HAE IN-MOTION® Virtual Challenge is a month-long community challenge where you can walk, run, swim, or ride—any way you like—and log your activity directly on the OneCause platform.

It’s simple to participate! This virtual event fits seamlessly into your daily routine, helping raise awareness for HAE while you stay active. Our goal is to collectively reach 10,000 miles by September 30th and raise funds for the HAEA programs and services.

Join the fun with your HAEA family, spread awareness, raise funds, and compete for exciting prizes!

For more details or questions, reach out to Ianice Viel at ianiceviel@haea.org.

Are you ready to raise HAE awareness? Register TODAY here! https://p2p.onecause.com/2024haeinmotion

Apply for the Spring 2025 HAEA Scholarships Before September 30th!

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.

Building Connections: Highlights from the NYC HAEA Community Connections Dinner

The HAEA recently hosted a successful Community Connections Dinner in New York City, bringing together over 40 individuals with HAE and their families from the local area. Attendees enjoyed a night of delicious food, meaningful conversations, and an opportunity to strengthen connections within the HAE community. The atmosphere of warmth permeated the room creating an atmosphere enabling new friendships and community bonds.

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

Moving from stress to self-care

Do you already have ideas for self-care and want to share them with others? Or are you looking for ways to take care of yourself and unsure of where to start? The HAEA CARE Groups are a great way to connect with other members of the HAEA community to both receive and offer support or ideas for self-care and emotional wellness.

While transitioning from summer to fall, it’s a good time to remember the importance of transitioning from “stress mode” to “self-care” mode. When we’re under extreme stress it can impact our memory and ability to think clearly. This can make it even more challenging to remember to take care of ourselves when we need it the most. If you find that you have a hard time remembering to practice your activities for self-care when you are stressed, think about some ways you can remind yourself. Consider options like making a list of things that help you de-stress and putting that list in a place you see often, or asking a loved one to check in with you if they notice that you’re struggling.

Upcoming HAEA CARE Groups

September topic: Self-care September.
Dates:

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

December topic: End of Year Reflection - How has Your Self-Care Improved?
Dates:

Wednesday, December 4, 2024 - 7:30 PM ET / 4:30 PM PT
Thursday, December 12, 2024 - 11:00 AM ET / 8:00 AM PT
Tuesday, December 17, 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 Community Blog: Going Back to School With HAE

Each fall, millions of students prepare to go back to school, a milestone often met with excitement and jitters. For those living with HAE and their caregivers, navigating a new school year means also facing additional considerations.

Explore tips and best practices for children and young adults on how to navigate going back to school with HAE in this month's featured article on the HAEA Community Blog!

Read Going Back to School With HAE by clicking HERE!
Would you like to share a unique story or opinion about your HAE? The HAEA Community Blog is the best platform to share your story with other members of the HAE community. You can share your story HERE!

Podcasts

HAE Speaks Podcast: Ahead of the Swell - Uncovering the Target That Could Stop Attacks

As a rare condition, understanding the root cause of HAE is crucial for improving patient management and care. On this episode of the HAE Speaks podcast, doctors Raffi Tachdjian, MD, MPH, and Jay Kashkin, MD, dive deep into the critical role of factor XIIa on the HAE pathway.

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

Listen to the #BeyondHAE Podcast: A Day in the Life of Zach

Youth Podcast series

In this episode of the #BeyondHAE podcast, hosted by Youth Leadership Council Member Noah, Zach shares his journey with HAE, which began when he attended his first HAEA event at the young age of 9. Thirteen years later, Zach has built lifelong friendships and developed essential advocacy skills that have shaped who he is today. Known by many for his regular involvement in HAEA programs and events, Zach discusses living with HAE, the importance of taking his medication on time, and how he manages HAE in his daily life. Don’t miss this insightful installment of the #BeyondHAE Day in the Life Interview Series.

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

HAEA Events Calendar

Wednesday, September 25th at 7:00 PM ET / 4:00 PM PT

HAEA Treatment Education Series Webinar: The Right Therapy Matters

Guest Speakers: Cristine Radojicic, MD, and Zahra Khan, CSL Behring Patient Advocate
Sponsored by: CSL Behring
Link Webinar: https://haea.zoom.us/j/85147489172
Phone: +1 646 558 8656
Webinar ID: 851 4748 9172
Register here: https://www.facebook.com/share/4VTkYG1NDwBqC2iz/

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

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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 © (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.