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IN THIS ISSUE



In-Motion
Over 350 HAEA Friends Stepped It Up for HAE and Raised Awareness During the 2024 HAE IN-MOTION® Virtual Event!

A heartfelt thank you to everyone who participated in the 2024 HAE IN-MOTION® – Step It Up for HAE virtual event! Your enthusiasm and commitment made this effort a huge success, uniting our community in the ongoing pursuit of improved access to modern therapies and advancing HAE research.

We are especially grateful to our HAEA friends who shared their personal stories, submitted photos, and helped raise crucial funds for this important cause.

Thank you for being part of this inspiring event. Together, we are stronger!

Stay connected on HAEA's social media channels for updates on future events!


HAEA Youth
Celebrating Youth Advocacy Month by Recognizing Our Next Generation of Leaders

Every October, we celebrate Youth Advocacy Month by showcasing the stories and activities of the youngest advocates in our community. This year, we are thrilled to announce the launch of the Youth Advocacy Achievement League, an elite group of young advocates who have stepped up to raise HAE awareness, advocated for legislative change, or made an impact in their local community. Over 30 remarkable young individuals have been nominated to be members of the League.

We look forward to sharing their inspiring activities on social media and celebrating the difference they are making as leaders and changemakers. These advocates are the next generation of HAEA leaders and their efforts serve as a powerful reminder of the importance of youth voices in driving meaningful change. Stay tuned to learn more about these amazing young people and join us in honoring their achievements throughout Youth Advocacy Month!


Medicare
Be Prepared to Choose an Optimal Insurance Plan: Open Enrollment Season Is Upon Us

It is that time of year again, insurance open enrollment season. It is important for everyone to take time and evaluate your current insurance plan to ensure that it continues to meet your healthcare needs, including coverage of your HAE medications.

Important Open Enrollment Information:

Medicare Open Enrollment October 15th - December - 7th
www.medicare.gov
There are several changes related to medicare for 2025, take the time to read your plan and research the best plan for you. Whether it is a straight Medicare Plan including parts A, B & D (drug plan) or a Medicare Advantage Plan.
There is not one plan that works for everyone so it is important to research a plan that will meet your needs.

HAEA Webinar - Medicare 101: The Essentials You Need to Know -

Curious about how switching to Medicare will affect your access to HAE medications? Take time to review the following webinar to learn how to navigate the enrollment process and get expert advice from guest speaker, Jerilyn Arneson, PharmD, BCOP, on what you need to consider!

Watch the webinar HERE!

Affordable Care Act (ACA) Open Enrollment November 1st - December 15th
www.healthcare.gov
Many of the ACA insurance plans cover HAE medications, making them a good option to look into if you are needing to make a change in your insurance coverage.

Employer Healthcare Plans - Check with your employer for specific enrollment dates and plan options, including medication coverage.

Financial Assistance If you are receiving financial assistance from one of the foundations like The Assistance Fund (TAF) or Accessia Health, it is important that you also check with the programs to see when your enrollment dates are so you don’t miss any of their deadlines for financial assistance for 2025.

The Assistance Fund https://tafcares.org/
Accesia Health https://accessiahealth.org/

Focusing on Charitable Assistance: An Interview with Accessia Health and The Assistance Fund - https://vimeo.com/930309489?share=copy#t=0

During this informative session, representatives from Accessia Health and The Assistance Fund provide insights into how these programs can offer financial support for various medical expenses related to HAE management.

The HAEA Health team is here to help you as you navigate the sometimes confusing insurance open enrollment season. Please contact us via email at health@haea.org or call us at 866-798-5598


Open Enrollment
On Medicare or Soon to Be Eligible? Explore the HAEA Academy Medicare Basics Course

Looking to expand your knowledge of Medicare? Dive into the HAE Academy's FREE online course that offers a clear introduction to Medicare including descriptions of its key components – Parts A, B, C, and D. Learn about eligibility, the enrollment process, and valuable resources designed to help individuals with HAE make informed Medicare-related healthcare decisions.

Take the FREE course today by clicking here!
HAEA CARE Groups (Community, Acceptance, Respect, Empathy)

Finding the treats when HAE feels like nothing but tricks

When you have a chronic illness you likely have to navigate tricky situations related to insurance, doctor appointments, or access to medication. There is no way to live life completely stress free, but building resilience through practicing self-care can make it easier to endure the tough times.

If you find that you are often overwhelmed and struggle to cope with stress, look for the moments that feel like a treat instead. Living with a rare disease can feel isolating, but there’s a whole community of people with similar experiences you share a connection with.

Having HAE or caring for a loved one with HAE can be frustrating - to say the least - but if you stop to think about it you may find some skills you’ve learned because of HAE.

Upcoming HAEA CARE Groups

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

Newsletter icon Podcasts

PodcastSpeaks
#BeyondHAE Podcast: Empowering Youth Voices: Ally & Luke's Journey in Legislative Advocacy

Youth Podcast series In this special Youth Advocacy Month episode, join host Kobe as they sit down with HAEA Youth Advocacy Network Regional Leaders, Ally and Luke, to discuss their impactful experiences as young advocates during HAEA's Capitol Hill Day and advocacy training workshops. Ally and Luke share what it’s like to participate in legislative visits, why it’s crucial for young people to be involved in advocacy, and how their passion for legislative change drives their work in the HAE community. This is a must-listen episode for young people ready to amplify their voices and lead the way in legislative advocacy!

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

HAEA Events Calendar HAEA Events Calendar


webinar Thursday, October 17th at 7:00 PM ET / 4:00 PM PT

in-person Saturday, October 19th at 10:00 AM - 2:00 PM CT
Clinical Trial icon 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.

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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.