HAEA Advocates Send a Powerful Message to Elected Leaders During 2023 Capitol Hill Day

During this highly successful meeting, HAEA friends communicated a clear message to their elected officials regarding the continued need for charitable assistance programs to cover insurance copays and premiums and continued access to life saving HAE therapies.

IF YOU MISSED THE EVENT, YOU CAN STILL PARTICIPATE

Click on the links below to watch the recording and participate in the HAEA’s Grassroots Advocacy Program.

• Watch the Capitol Hill Campaign kick-off meeting here.
• Join the Grassroots Advocacy Network here.
• Write a letter to your legislators using VoterVoice here.

Thank you for your continued support in HAE advocacy!

Please reach out to the HAEA advocacy team if you have any questions. We look forward to working with all of you in the HAEA Grassroots Advocacy Network!

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Get ready to raise HAE awareness by being part of our 2023 HAE IN-MOTION® “Step it Up for HAE” event!

Raise HAE awareness in your community! Grab your sneakers, rally your friends and family, and be part of the exciting 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 30,000 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!

Register to 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!

To register, please visit https://p2p.onecause.com/2023haeinmotion

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

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HAE doesn’t have to limit your opportunities. Hear how Nathan, a young individual with HAE and former HAEA Social Media Intern, pursued his dreams of attending college and traveling abroad after learning to embrace his diagnosis, manage his symptoms, and advocate for himself.

Access the HAEA Community Blog and read HAE Didn’t Hold Me Back from Seeing the World by clicking HERE!

Would you like to share a unique story or opinion about your HAE? The HAEA Community Blog is the ideal platform to share your personal story with other members of the HAE community. You can share your story HERE!

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Calling all Baby Boomers! This HAEA virtual Meet and Greet event is designed just for you!

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

We are looking forward to welcoming Lois Perry as our guest speaker for this event.

Register

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Apply now for the 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!The HAEA helps students with a confirmed HAE diagnosis pursue their academic goals by easing the financial burden associated with higher education. Applications for the Pam King HAEA Scholarship Program are open twice a year.

We invite interested students to take advantage of this opportunity and complete your application before September 30th!

Apply HERE!

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Raise HAE Awareness in Your Community with a Creative DIY Event!

Spreading HAE awareness helps rally support for research, access to treatments, and improved quality of life. You can raise awareness by hosting a DIY (Do It Yourself) event in your community!

This year, members of the HAE community have hosted DIY Awareness walks, community lunches, parades, bake sales, tea parties, and more! The HAEA has many resources available to assist you in planning and will be with you every step of the way to deliver a successful event.

If you are interested in hosting a DIY event, please reach out to Mike Mallory at mikemallory@haea.org.

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HAEA Cares Kits are available for Kids, Teens, and Young Adults

Did you know the HAEA offers Cares Kits for kids, teens, and young adults with an HAE diagnosis? Each kit is uniquely designed for kids at different life stages and includes useful resources and fun giveaways to support young individuals affected by HAE during their journey.

Order a FREE Kit today!

Learn more

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HAE Speaks Podcast

HAE Speaks Podcast - Episode 40: In this episode of HAE Speaks podcast, Missy and Karissa discuss what it is like to go away to college while living with HAE. Karissa shares some lessons learned as well as tips and tricks to help you be more prepared for a rewarding college experience.

Listen Now!

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#BeyondHAE Youth Podcast

This month's BeyondHAE’s Digging Deeper Interview Series features HAEA Youth Leadership Council member Noah who interviews Natalie, an award winning filmmaker who has HAE. In this episode, Natalie talks about what it was like for her growing up with HAE, and how she pushed beyond her diagnosis to achieve her goal of becoming a filmmaker and starting a family. This is Natalie's story.

Listen to the Podcast here!

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

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

The HAEA CARE Groups are held virtually three times a month through Zoom. For the month of September, our HAEA CARE Groups will discuss the question “how do you practice self-care?” Join us as we share ideas for coping with the challenges of living with HAE.

Upcoming HAEA CARE Groups:

• Thursday, September 14, 2023 - 11:00 AM ET / 8:00 AM PT
• Tuesday, September 19, 2023 - 10:00 PM ET / 7:00 PM PT
• Wednesday, October 4, 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 877-839-4232 or emailing an advocate at health@haea.org.

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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.

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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.

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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.

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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 877-839-4232 to see if there will be an active clinical trial site in your area.

Wednesday, September 20th, 2023 - 7:00 PM ET / 4:00 PM PT

• HAEA Treatment Education Series Webinar: Open Enrollment
• Speakers: Autumn Burnette, MD, FACAAI
  Lisa (Patient Advocate)
• Sponsored by: CSL Behring
• Link Webinar: https://haea.zoom.us/j/88913488142
• Phone: +1 646 558 8656 Webinar ID: 889 1348 8142

 REGISTER HERE 

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Upcoming HAEA CARE GROUPS:

• Thursday, September 14, 2023 - 11:00 AM ET / 8:00 AM PT
• Tuesday, September 19, 2023 - 10:00 PM ET / 7:00 PM PT
• Wednesday, October 4, 2023 - 7:30 PM ET / 4:30 PM PT

If you are interested in joining a virtual support group, please reach out to an advocate by calling 877-839-4232 or emailing health@haea.org.

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Update your HAEA membership information HERE!

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10560 Main Street, Suite PS40 Fairfax City, VA 22030		CONTACT AN HAE ADVOCATE: (877) 839-4232
DONATE		JOIN HAEA
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.