US Hereditary Angioedema Association


IN THIS ISSUE
Share your Summit Feedback Lois Perry joins the US HAEA Board of Directors Medicare Webinar 2023 HAEA Virtual Capitol Hill Day HAE IN-MOTION® - Step It Up for HAE Event 2024 HAEi Regional Conference Track Your HAE Using the HAE TrackR App	Baby Boomer Meet and Greet Pam King HAEA Scholarship Program HAE Speaks Podcast HAEA CARE Groups Clinical Trial Updates HAEA Events Calendar Social Media Snapshots

2023 US HAEA National Summit - Living Beyond Boundaries

The HAEA wants to extend a heartfelt thank you to the over 1,200 HAE friends who joined us in Orlando, Florida for our 2023 US HAEA National Summit. Together, we embarked on an amazing 3-day journey filled with thought provoking workshops, updates on the latest HAE medical breakthroughs, and fun-filled activities, including an inspiring HAE IN-MOTION® awareness walk.

We kindly request a few minutes of your time to fill out our Post-Summit survey. Your input will not only shape our upcoming events but will also enable us to serve you better. We genuinely appreciate your support in making the 2023 US HAEA National Summit one to remember.

We would like insights from every participant to help us develop even more impactful future events. Click HERE to give us your thoughts!

Thanks for being a part of the HAEA family and making this 2023 Summit a huge success!

Check out the 2023 HAEA National Summit video here!

Lois Perry Honored at the 2023 US HAEA National Summit

As many of you already know, Lois Perry has retired from the US HAEA. Her contributions and spirit endure as do her accomplishments in transforming HAE from a catastrophic medical need to a condition that is in most cases well-managed.

The US HAEA proudly honored Lois’ storied career at our National Summit Caregiver Dinner where it was also announced that she has been appointed to the HAEA Board of Directors.

Learn How You Can Get Ready for Medicare Open Enrollment

Medicare Open Enrollment will be here before we know it. Whether you are re-enrolling or gathering information for the future, please join us on September 7, 2023 for an educational webinar to learn how to navigate the process.

This webinar will review Medicare basics, discuss the types of Medicare plans available and supplemental/alternative Medicare plans. Although many adults with rare diseases qualify for Medicare, figuring out how to do this can be incredibly challenging, time-consuming, and frustrating. This webinar will provide resources to help you better understand your options.

Watch the Webinar Here

Act to inform your elected representatives about the everyday challenges we face maintaining access to HAE medicines

Now more than ever, it is vitally important that you join us for the 2023 HAEA Virtual Capitol Hill Day on September 12, 2023!

The event will kick off on September 12th at 3:00 PM ET/ 12:00 PM PT, with an informative and virtual program that will shed light on the key issues that are affecting the HAE community and offer training on how to be an effective advocate.

Let’s all participate in this important event so congress can clearly understand the needs of our HAEA community!

Get ready to raise HAE awareness with our 2023 HAE IN-MOTION® - Step it Up for HAE event!

Registration for the 2023 HAE IN-MOTION® - Step it Up for HAE event opens August 28th!

Grab your sneakers and rally your friends and family to raise awareness for HAE while being active through the 2023 HAE IN-MOTION® - Step it Up for HAE event.

This fun HAEA event will take place from September 4th - September 22nd, and it is absolutely FREE to participate! Challenge yourself and help us reach our goal of completing 50,000 miles by September 22nd to spread HAE awareness.

Register early, set up your individual or team page and get ready to start tracking your activity on September 4th!

Upon registration, all participants will receive a 2023 HAE IN-MOTION® - Step it Up for HAE swag bag that includes a t-shirt, medal, and other goodies to help you while you track your steps!

Stay tuned for more information on how to register beginning on August 28, 2023!

If you have any questions, please contact Mike Mallory at mikemallory@haea.org.

Registration for the 2024 Americas HAEi Regional Conference Travel Grants will Open on August 21st!

The HAEi is hosting a conference in Panama City, Panama from March 15-17, 2024. HAE patients, caregivers, board members, and leadership of the HAEi Member Organizations from North, Central, and South America are invited to participate in this regional conference together with healthcare professionals and industry representatives.

You can register for a travel grant to attend this event on August 21, 2023 at haei.org.

Get a handle on your HAE by downloading our easy-to-use mobile app

HAE TrackR is now available in App Store and Google Play!

HAE TrackR helps people with HAE better manage their HAE and has many very useful features:

Record your treatments (preventative, on-demand, and clinical trial medication)
Record attacks and developments/improvements of attacks
Smart reminder functionality for prophylactic treatments
Safe and secure, product and company neutral with no commercial interests

Join fellow Baby Boomers for an interesting discussion about your current journey in life including the impact of HAE

Learn. Connect. Share.

The US Hereditary Angioedema Association invites HAEA members from the Baby Boomer generation to join us for an informative and interactive Virtual Meet and Greet on Tuesday, September 26th at 7:00 PM ET / 4:00 PM PT.

Attendees will have the opportunity to connect and chat with other HAEA members and caregivers at the event to discuss their challenges and triumphs. HAEA staff will be present to answer questions and offer guidance on the topics discussed.

Register today!

Date: Tuesday, September 26, 2023
Time: 7:00 PM ET/ 4:00 PM PT
Guest Speaker: Lois Perry
Location: This event is virtual, join from the comfort of your home.

College Students with HAE! Apply for a Spring 2024 Pam King HAEA Scholarship!

Are you planning to attend a college or university in the Spring of 2024? The HAEA helps students with a confirmed HAE diagnosis pursue their academic goals by reducing the financial burden associated with higher education. Applications for the Pam King HAEA Scholarship Program are open twice a year. We invite interested individuals to take advantage of this opportunity and complete your application before September 30th!

Apply HERE!

Podcasts

HAE Speaks Podcast

HAE Speaks Podcast - Episode 39: Adina Mauk: HAEA Health Advocate, shares the importance of mindfulness for better health along with tips and tricks.

Looking for ideas and methods for self-care? Adina has just the information you are looking for! In this episode of the HAE Speaks podcast Adina talks about her journey to self-care. Living with HAE can be stressful both for someone living with HAE as well as for caregivers. Mindfulness can help you focus on what you are experiencing in the moment and be used as a tool for effectively managing stress.

Listen Now!

Do you have a topic, question, or idea that you would like us to cover? Send your suggestion to Mike Mallory at mikemallory@haea.org.

HAE Speaks and #BeyondHAE are available to download on Apple Podcasts, Spotify, or wherever you get your latest podcasts!

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

“Wisdom is knowing when to have rest, when to have activity, and how much of each to have.” - Sri Sri Ravi Shankar

The HAEA CARE Groups are held virtually three times a month through Zoom. This month our HAEA CARE Groups will share ideas for rest, relaxation, and recognizing when we need to step back to take care of ourselves. Join us next month when we talk about self-care in September.

Upcoming HAEA CARE Groups:

Tuesday, August 15, 2023 - 10:00 PM ET / 7:00 PM PT
Wednesday, September 6, 2023 - 7:30 PM ET / 4:30 PM PT

These virtual group meetings offer opportunities for our community to share experiences and support others. 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 ALPHA-STAR Trial

The US HAEA is currently assisting Astria Pharmaceuticals in recruiting people for the ALPHA-STAR trial, a Phase 1 study evaluating a new medicine (STAR-0215) for long acting prevention of HAE attacks. STAR-0215 is delivered subcutaneously once every 3 months or in some cases even less frequently. This trial is not placebo controlled, so each participant will receive the trial medication.

You may qualify for the ALPHA-STAR study if you are 18 years of age or older and diagnosed with HAE Type I or II, have had at least 4 attacks in the past year, and are not on preventative therapy. Individuals currently on preventative therapy and interested in participating should consult with their physician to discuss the risks and benefits before discontinuing medication.

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 either 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.

HAERMONY₁ Study

The US HAEA is currently assisting BioMarin in recruiting people with HAE for the HAERMONY1 study, an investigational gene therapy called BMN 331 to improve HAE symptoms in adults 18 years of age and older diagnosed with HAE due to C1-INH deficiency.

To qualify for the HAERMONY₁ study, participants must be 18 years of age or older; diagnosed with HAE due to C1-INH deficiency; have 6 months of a continuous prophylaxis or on-demand treatment regimen (prior to study enrollment); and a documented attack frequency of at least 1 attack per month on average.
*Additional study requirements apply.

For those who qualify, participation lasts about 5 years after receiving the study drug. There are weekly and monthly visits during the first year. After the first year, the visits occur every three or every six months.

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.

HAEA Events Calendar

Thursday, August 24, 2023 - 7:00 PM ET / 4:00 PM PT

Diagnosing & Managing All HAE Patient Types (VIRTUAL)

Speakers: Doug Jones, MD
Sponsored by: Pharming
Link Webinar: https://haea.zoom.us/j/81854680241
Phone: +1 305 224 1968 Webinar ID: 818 5468 0241

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 © (2023) 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.