US Hereditary Angioedema Association


IN THIS ISSUE
Brighten the Future for the HAE Community this hae day :-) on May 16th! Exciting Research Advances in HAE with Normal C1-Inhibitor Help Your Child Meet HAE Friends Through the Brady Club Pen Pal Program Listen to the HAE Speaks Podcast: My Cross-Country Trip Across the United States to Raise HAE Awareness	Learn How to Build a Successful Self-Care Routine Through the HAEA Care Groups Clinical Trial Updates HAEA Events Calendar Social Media Snapshots

Brighten the Future for the HAE Community this hae day :-) on May 16th!

Let's unite to shape a brighter future for the HAE Community this hae day :-) May 16th! The HAEA community's diligent efforts to support development of modern therapies have transformed a catastrophic unmet medical need into a condition that can be managed. Nevertheless, our success in gaining access to a variety of treatment options has resulted in health insurers finding ways to delay and/or deny coverage for prescribed HAE medicines.

Fighting to maintain access and insurance coverage is essential to preserving the HAEA community’s hard-fought gains in quality of life. This is why it is more important than ever that HAE friends remain united and use our collective voices on hae day :-).

hae day :-) 2024 is special because we are commemorating the HAEA’s 25th Anniversary as we look forward to an even brighter future and take action to demonstrate our

unity as a community,
willingness to participate in activities that protect and expand access to medicines that we fought so hard to get approved, and
support programs and services that will endure for future generations of people with HAE and their families.

Show Your Support for the Future of HAE!

Step 1: Capture the Moment
Snap a photo with your poster, and capture the spirit of protecting future generations. Don't forget to showcase your HAE swag – let your personality shine!

Step 2: Take Action and Raise Awareness: Share your photo on our hae day :-) photo wall by uploading it below. Then post it on social media using the hashtag #haeday. Every post matters, and your contribution strengthens our united voice! Be sure to upload your photos to the HAEA website here: https://www.haea.org/pages/p/hae_day

Step 3: Invest in the Future
We are thrilled to announce the launch of the HAEA Endowment Fund, a pivotal step towards securing a sustainable and enduring future for the HAEA and our mission.

The HAEA Endowment Fund has been established to create sustained financial support that secures the HAEA’s enduring impact on the community for years to come, including:

future programming to unite people with HAE, their families, physicians, industry partners, insurance and pharmaceutical companies
engage in future legislative efforts to ensure access to modern HAE therapies
engage in research for better treatments and ultimately, a cure, and
ongoing support services for all people suffering from HAE, no matter their stage of life or unique circumstances.

Make a contribution to the HAEA Endowment Fund by clicking the donate button below.

Donate Here

Exciting Research Advances in HAE with Normal C1-Inhibitor

We continue to make significant investments in advancing the science to improve the quality of life for members of our community diagnosed with HAE with Normal C1-Inhibitor.

In the Fall of 2023, the HAEA sponsored the International Symposium on HAE with Normal C1-Inhibitor, which included over 30 HAE experts from around the globe. This group is now working to establish new guidelines for diagnosing and treating HAE with Normal C1-Inhibitor as well as outlining compelling avenues for future research.

Our US HAEA Medical Advisory Board 2020 Guidelines for the Management of Hereditary Angioedema also prominently featured this form of HAE and strongly recommend that people with unexplained swelling conditions see an angioedema expert with experience in diagnosing and treating complex cases.

Our quest to help members of our community with the HAE with Normal C1-Inhibitor diagnosis continues, and we look forward to sharing the medical journal article when it's published in 2024.

Help Your Child Meet HAE Friends Through The Brady Club Pen Pal Program

We are thrilled to introduce a new initiative that aims to bring joy, support, and lasting connections to our incredible HAE Kids community – "the Brady Club Pen Pal Program".

What is the Brady Club Pen Pal Program?
In the spirit of fostering friendships and building a sense of community, we have launched a Pen Pal program designed for affected children and their siblings between the ages of 7 and 12. Our goal is to create a network where these young warriors can connect, build friendships, and uplift one another.

How Does It Work?
Sign Up: Parents or guardians can visit our website https://www.haea.org/autoforms/f/295 and fill out a simple form to enroll their child in the program.

Pen Pal Matching: Once enrolled, each child will be carefully matched with a Pen Pal from a different location, creating a diverse and exciting network of friends.

Let's Build a World of Joyful Connections!
We believe in the power of community, and the Brady Club Pen Pals Program creates a space where friendships flourish, smiles abound, and hearts are connected across the miles.

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

What are parents saying about the program?

“My daughter is loving the pen pal program. She and her pen pal have exchanged a couple letters and even got to FaceTime last week! The kit was really helpful. Thank you so much for organizing this. We love it!” -Brady Club Parent

Thank you for being a part of this incredible journey. Together, we can make a positive impact in the lives of HAE-affected kids. Sign your child up today!

Podcasts

HAE Speaks Podcast - Episode 46: My Cross-Country Trip Across the United States to Raise HAE Awareness

This month’s HAE Speaks Podcast episode features John, who shares his inspiring journey of raising HAE awareness as he traveled across the country. Listen in as John recounts his innovative tactics and heartfelt efforts while traveling through twenty states, fundraising, and spreading awareness for HAE.

Listen Now!

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

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

Learn How to Build a Successful Self-Care Routine Through the HAEA CARE Groups

The HAEA CARE Groups offer opportunities for our community to share experiences and support others. Below are the topics and meeting times we will be getting together through Zoom for the next few months.

Upcoming HAEA CARE Groups
April topic: How to build a successful self-care routine.
Dates:

Thursday, April 11, 2024 - 11:00 AM ET / 8:00 AM PT
Tuesday, April 16, 2024 - 10:00 PM ET / 7:00 PM PT

May topic: Celebrating hae day :-) and tips for sharing our unique HAE stories.
Dates:

Wednesday, May 1, 2024 - 7:30 PM ET / 4:30 PM PT
Thursday, May 9, 2024 - 11:00 AM ET / 8:00 AM PT
Tuesday, May 21, 2024 - 10:00 PM ET / 7:00 PM PT

June topic: Self-care activities in the great outdoors.
Dates:

Wednesday, June 5, 2024 - 7:30 PM ET / 4:30 PM PT
Thursday, June 13, 2024 - 11:00 AM ET / 8:00 AM PT
Tuesday, June 18, 2024 - 10:00 PM ET / 7:00 PM PT

Take the Time to Spring into Self-Care
Spring is a great time to reflect on how you take care of yourself and think of ways to refresh your habits. Here are some things you can try to revitalize your self-care:

Add some activity to your day like taking a walk or dancing to your favorite music.
Practice setting boundaries with the things in life that cause stress, like keeping a good work-life balance.
Set aside 15 minutes each day to declutter your space to keep things from piling up.
Avoid using your smartphone or tablet one to two hours before you go to bed if you find you are often struggling to fall asleep.

Remember that self-care is personalized and what works for one person may not work for you. Try different activities to see what works best for you!

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

HAEA Treatment Education Series Webinar: From Awareness to Action: HAE Triggers and HAE Attack reduction with Takhzyro

Guest Speakers: Douglas Lotz, MD
Sarah B. and Jack G., Patient Advocates
Sponsored by: Takeda
Link Webinar: https://haea.zoom.us/j/89834207910
Phone: +1 301 715 8592
Webinar ID: 898 3420 7910

Mark your calendars for an incredible day of connection and support!

You're invited to the HAE IN-MOTION® event at Generations Park Lake Pavillion in Bedford, Texas, on April 20th, 2024, from 10:00AM - 2:00PM GMT.

What can you expect?

Meet others living with HAE
Engage with US Hereditary Angioedema Association staff
Receive a FREE swag bag and HAE IN-MOTION® T-shirt upon arrival
Join an awareness walk showcasing unity
Enjoy lunch and lawn games with the community

Thank you to our Sponsors!
Gold: BioCryst, CSL Behring, Pharming, and Takeda
Bronze: Accredo and Astria

Secure your spot HERE!

HAEA Meet and Greet Lunch in Cleveland

Date: Saturday, April 13th, 2024
Time: 12:00 PM - 2:00 PM ET
Location: TownHall Ohio City
1909 West 25th St. Cleveland, OH 44113

HAEA Meet and Greet Lunch in Virginia

Date: Saturday, April 27, 2024
Time: 12:30 PM - 2:30 PM ET
Location: Wildfire Tysons
2001 International Dr, McLean, VA 22102

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.