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Dear HAEA Friends,
Twenty-five years ago, a group of people who were diagnosed with an extremely rare and serious condition called HAE found each other online and decided that it was high time for bold action to address what they were all experiencing—pain, suffering, disability, and a tragically high death rate among affected family members. These HAE pioneers understood that fierce advocacy for better treatments was the only solution for avoiding frightening emergency room visits, and having to rely on anabolic steroids as the only approved HAE treatment. Realizing that there is strength in numbers, these tenacious activists established the US HAE Association (HAEA) so that HAE sufferers, caregivers, and family members could band together and advocate for a better life.
Leadership of the newly formed Association went right to work learning all they could from other successful patient groups. The early “lessons learned” informed an advocacy model consisting of three key components that are simple in concept, but so effective that it continues delivering improved therapies and a better quality of life for the HAE community. The HAEA first and foremost strives to unite, motivate, and serve people with HAE as well as their caregivers, and families. Simultaneously, substantial effort is continuously put into identifying and nurturing relationships with compassionate specialist physicians willing to treat people with HAE and participate in clinical trials. The third component involves attracting pharmaceutical industry investment in new medicine development by making sure companies know that there is an organized HAE community, including experienced specialist physicians, who are organized and willing to enthusiastically participate in clinical research.
I invite you to click on the link provided below to view 25 key milestones achieved during the HAEA’s 25 years of leading and protecting the HAE community.
Every HAEA friend should take great pride in being the driving force behind these remarkable achievements! Having access to 8 modern HAE medicines with many more in clinical development, is unprecedented in the ultra-orphan disease environment.
The 25-year anniversary of the US HAEA offers us a great opportunity to renew our shared commitment to face any and all challenges together with one powerful voice!
With warm regards to HAEA friends,
Anthony J. Castaldo
Chief Executive Officer
From the HAEA Board of Directors
The continued success of the US HAEA, now more than ever, depends on the stewardship provided by leaders who possess the experience, talent, and motivation to meet the opportunities and challenges facing our community now and in the future. To that end, we are very pleased to announce the appointment of Henrik Balle Boysen as HAEA President.
As many of you already know, Henrik has served on the HAEA Board of Directors for the past six years and has spent the past two decades in high level HAE advocacy leadership positions that include President of HAE International and President of HAE Scandinavia. He has a unique ability to not only anticipate needs, but design and implement innovative advocacy programs, services, and technologies that help people with HAE improve their quality of life.
Please join us in congratulating Henrik on his new position. Tony will continue in his role as the HAEA’s Chief Executive Officer and has also been appointed as Chairman of the Board. He looks forward to working closely with Henrik to continue fulfilling the vitally important mission of serving the HAEA community.
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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.
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Join the Next Generation of HAEA Leaders with the Youth Leadership Programs
The HAEA has redesigned and revamped two of our most successful Youth Leadership programs: The Youth Social Media Internship and the Youth Leadership Council (YLC). Whether you have previously been a part of our programs or are a brand new HAEA youth member, make sure to check it out!
All HAEA Youth Leadership Program participants will collaborate through:
- An immersive in-person training
- Engaging projects to further professional development
- Exciting opportunities to travel with the HAEA
- The chance to build lasting friendships in the HAEA youth community
Under the umbrella of the HAEA Youth Leadership Program, participants can choose to enroll in the Social Media Internship or YLC using an easy online application. For more information on the Youth Leadership Program and each leadership track, reach out to Lisa Facciolla at Lisa@haea.org and Jess Myers at Jess@haea.org, or check out our webpage here.
You don't want to miss this opportunity! Applications will close on January 31st.
HAEA Community Blog
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In early September 2023, three HAEA Youth Leadership Council members had the privilege of speaking at Youth Fest 2023, part of the annual Rare Fair conference.
Launched in 2018, the Rare Fair is an event that connects rare disease patients, families, and other stakeholders across the globe. In 2023, the event was held both virtually and in person. HAEA’s Community Engagement Specialist, Lisa Facciolla, participated and interviewed each HAEA Youth Leadership Council Member attendee to learn more about their experiences at the event!
Access the HAEA Community Blog and read HAEA Youth Leadership Council Represents at The Rare Fair Youth Fest 2023 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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Podcasts
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#BeyondHAE Youth Podcast: A Parent’s Heartfelt Experience as an HAE Caregiver
We are thrilled to introduce a fresh interview series on the #BeyondHAE podcast! Our "Day in the Life" episodes will delve into the experiences of young individuals with HAE, spanning from diagnosis to treatment management and their everyday routines. In this episode, we shine the spotlight on Bryn who was diagnosed at 16. Youth Leader Kobe takes the reins in this episode, guiding us through a Day in the Life of Bryn.
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)
“Reflective thinking turns experience into insight.” – John C. Maxwell
Feeling stressed after the holidays? For the month of January our HAEA CARE Groups will come together to explore new ways to manage stress and practice self-care. Join us in February when we share ways to talk about HAE in honor of Rare Disease Day.
The HAEA CARE Groups are held virtually three times a month through Zoom. Upcoming HAEA CARE Groups:>
- Thursday, January 11, 2024 - 11:00 AM ET / 8:00 AM PT
- Tuesday, January 16, 2024 - 10:00 PM ET / 7:00 PM PT
- Wednesday, February 7, 2024 - 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.
Tips for a Happy and Healthy New Year
The beginning of the year is a great time to connect with your HAE treating physician, specialty pharmacy, and the support team associated with the company that manufactures your medication. Take a moment to ask yourself:
- Has your insurance changed? Even with the same insurance company, sometimes the group number changes and the updated information needs to be provided to your specialty pharmacy, your physician's office, and the drug manufacturer.
- Do you need to set up an appointment to have an in person visit with your physician? Connecting with your care team for your medication is important early in the year. Appointments are usually required two times a year, and getting a spot early can limit any possible delays in your medication getting prior authorization.
- Do you know when your prior authorization is coming due? Sometimes the insurance company might change the times of year and your care team at the manufacturer can help you determine the dates and steps needed.
Have questions about prior authorizations and not sure where to start? Don’t forget you can reach out to the HAEA Health team by calling 866-798-5598 or sending an email to health@haea.org. We are here to help and enjoy connecting with each of you!
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Clinical Trials |
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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HAEA Events Calendar |
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Wednesday, January 24th at 7:00 PM ET / 4:00 PM PT
- HAEA Treatment Education Series Webinar: The Right Therapy Matters
HAEA Virtual Meet and Greet:
Date: February 8th, 2024
Time: 6:30 PM ET/ 3:30 PM PT
Virtual Event
Guest Speaker: Pamela Johnson, Individual with HAE
For more information, please contact Mike Mallory at mikemallory@haea.org.
Upcoming HAEA CARE GROUPS:
- Thursday, January 11, 2024 - 11:00 AM ET / 8:00 AM PT
- Tuesday, January 16, 2024 - 10:00 PM ET / 7:00 PM PT
- Wednesday, February 7, 2024 - 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 866-798-5598 or emailing health@haea.org.
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CONTACT AN HAE ADVOCATE:
(877) 839-4232
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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.
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