Now Available: US HAEA Insurance Reimbursement Guidebooks!

Now Available: US HAEA Insurance Reimbursement Guidebooks!

Are you prepared to deal with insurance reimbursement challenges for HAE medicines should they arise?

The HAEA has developed Insurance Reimbursement Guidebooks to help our community navigate insurance hurdles like reimbursement delays, denials, and appeals. There are two versions of the Guidebook available; one is tailored for people living with HAE and the other is designed for Healthcare Professionals.

Download the Guidebooks by visiting and clicking on the Resources tab, or order a hard copy version that will be mailed to you by filling out the request form online. You can also download or order a version for Healthcare Professionals and share it with your HAE treating physician.

Download the Guidebooks here!

Let’s Inspire, Empower, and Engage the Next Generation of HAEA Leaders Together!

Let’s Inspire, Empower, and Engage the Next Generation of HAEA Leaders Together!

2021 has been a memorable year. Thanks to globally collaborated medical breakthroughs and technological advances, most major restrictions have been lifted and pre-covid life is within reach. During this pivotal time, we want to ensure that our youngest community members feel well equipped to embrace their newfound autonomy in the world while simultaneously prioritizing and managing their health.

Click HERE to make a difference

The HAEA Youth Programs are specifically designed to provide children and youth with tools to lead happy and healthy lives by managing their HAE with self-awareness, confidence, and knowledge. In 2022, we will continue to provide HAE-specific learning through advocacy training and empowerment programming. In doing so, we hope to prepare our HAEA youth as steadfast and compassionate leaders committed to advancing HAE initiatives and advocacy. With your charitable contribution, you can inspire, empower, and engage the next generation of HAEA youth. Show your support by investing in the amazing young people of the HAEA community!

By donating to the #Families4HAE Fundraiser you can help students like Kyla achieve their dreams of higher education:

“The Pam King HAEA Scholarship has allowed me to see that even if HAE is a part of me, it doesn’t have to define you, set you back, or limit you. As individuals with HAE, we are so lucky to have the support from the HAEA that believes in us, wants us to succeed, and are willing to take measures to see that through.” - Kyla, Pam King HAEA Scholarship Recipient

Your charitable donation of $20, $50, $100, or hopefully more, will support the following vital HAEA Youth Programs:


Donate $100 to the Pam King HAEA Scholarship Program and help a student with HAE attend college. The HAEA provides scholarships of up to $2,500 twice a year.


Donate $50 to support the highly successful Youth Advocacy Program that teaches young people with HAE how to engage with elected representatives and advocate for themselves and the needs of the HAE community.


Donate $20 and we will send copies of the HAEA Children’s Book Series to local school libraries to help raise awareness about HAE.

Your generous tax-deductible contribution is an investment in the many ways we inspire, empower, and engage the next generation of HAEA leaders.

Click HERE to make a difference

Or send a check to: Hereditary Angioedema Association 10560 Main Street Suite PS40 Fairfax City, VA 22030 Please write “Families for HAE” in the memo!

Click HERE to donate to the #Families4HAE Fundraiser today!

The Holidays Are Coming!

The Holidays Are Coming!

Can you believe there are only 12 Fridays until Christmas? The holidays can be an exciting time full of family togetherness and memories, but for some, social gatherings and holiday “cheer” can also mean extra stress. It’s imperative to adopt healthy habits, both physically and mentally to cope with any holiday stress and anxiety.

According to the American Psychological Association, the most common symptoms related to stress around the holidays are fatigue, stress, irritability, bloating and sadness. Having to worry about your HAE in addition to these stressors can deplete your body’s physical and emotional resources, but this can all be avoided if you plan ahead! Knowing the best way to take care of YOU is vital for your overall health.

Make a commitment to practice consistent self care

Keep yourself organized in managing your HAE

Take these steps to prevent unnecessary stress during the holidays. With a little planning and positive thinking, you can relax and enjoy your time with family and friends. And don’t forget...You are NOT alone! If you need help with anything please reach out to an HAE Advocate.

The HAEA Health Team is always here for you! Please reach out to us at 866-798-5598 for assistance with: 1) insurance issues, 2) finding an HAE expert physician, 3) updating your member information, 4) joining a virtual support group, or 5) an HAE-related question.

November is National Caregivers Month!

November is National Caregivers Month!

The HAEA is pleased to recognize dedicated caregiver, Lesa M.!

“My mom has been like an HAE Fairy Godmother to me. She has walked me through everything since my diagnosis, and I am so grateful to her for that. Even though I'm 19 now, she still orders my medicine for me - and reminds me to take them!” -- Kobe M.

A sincere thank you for your dedicated service to the HAE community!

Recognize your caregiver today! Those who are nominated will receive a special gift and a kind note to thank them for their dedicated service to the HAE community!

The US HAEA is now accepting nominations for the HAEA's Caring for the Caregiver Program.

Do you have a caregiver in your life you would like to recognize? Let us know by clicking the link here!

For more information, please contact HAE Advocate, Lisa Facciolla, at

Recognize your caregiver today here!

HAEA Healthcare Hero Recognition Program

HAEA Healthcare Hero Recognition Program

The HAEA is pleased to recognize dedicated HAEA Healthcare Hero, John Bray, MD!

“Dr. Bray was my son and I’s doctor prior to moving out of state. Never have I had a doctor fight so hard to take care of me and my son. He and his team were always on top of our care and always went well beyond what would be considered standard care. He always came with a whole body approach, not just treating the symptom. I very clearly remember being blown away when he asked about my diet and sleep and provided tips on both. Sometimes, simple things get overlooked, but Dr. Bray never let the small things get away. I knew he was giving every patient that stepped through his doors the same high quality care he gave me and my son, and I greatly appreciate him for it. Many times, I walked into his office feeling just fine, but yet, somehow, I always left feeling better than when I walked in. His quality of care sets the bar so high that I find myself comparing every other doctor to him. I truly thank Dr. Bray and his team for the great care they provided to my son and I over the years. I hope this recognition shines a light on his great service, abilities, and character and that of his team.” -Jonathan

Thank you, Dr. Bray, for your dedicated service to the HAE community!

Recognize your HAEA healthcare hero through the HAEA Healthcare Hero Recognition Program! Those who are nominated will receive a personalized award to thank them for their dedicated service to the HAE community!

HAE Speaks Podcast

HAE Speaks Podcast

We invite you to download and listen to HAE Speaks, a podcast exclusively created for the HAEA community. The podcast series presents unique stories of individuals affected by HAE with the goal of connecting our community through shared experiences. We invite you to add HAE Speaks to your podcast playlist and listen on all major podcasting platforms!

Episode 18: Jenny talks about how she handles having HAE and putting herself first when she is not having the best of days. Jenny is a huge advocate of self care, especially as a person living with a rare disease.

Do you have a topic, question, or idea you would like us to cover? Send your suggestions to Mike Mallory at

CLICK HERE to listen to Episode 18 of the Podcast!

#BeyondHAE Youth Podcast - November Episode

#BeyondHAE Youth Podcast - November Episode

In this month’s episode of the #BeyondHAE Youth Podcast, we invite you to listen to Emma, who shares her personal HAE journey and how getting active in the HAEA community has helped her cope with her diagnosis.

The #BeyondHAE Youth Podcast series is a podcast produced BY young people with HAE FOR young people with HAE. Listen to stories from young people affected by HAE as they share the ways that they navigate life with HAE or support a diagnosed family member.

Listen to the Podcast here!

Clinical Trial Updates

Clinical Trial Updates

The US HAEA is currently assisting CSL Behring in recruiting people with HAE for the CSL 3002 Garadacimab study, a worldwide clinical research study to investigate the safety and effectiveness of an investigational subcutaneous medication given once a month to prevent Hereditary Angioedema (HAE) attacks. There are currently 13 active sites in the US.

In the 3002 study, doctors will be evaluating the long term use of garadacimab. This is an open label study with no placebo phase required. Patients (at least 12 years of age, type 1 or type 2 HAE) who participate in 3002 will receive garadacimab for at least one year. The use of on demand medication to help with acute attacks is permitted.

The HAEA is also supporting Takeda’s efforts in recruiting people with HAE with Normal C1-Inhibitor for their clinical trial. Individual sites will comply with state and local guidelines and safety protocols for bringing individuals into clinics.There are now 14 clinical trial sites actively enrolling, including new sites in Tampa, FL and Chicago, IL.

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 Treatment Education Series Webinar

HAEA Treatment Education Series Webinar

Link Webinar: Phone Number: +1 646 558 8656 (Webinar ID: 873 8134 1144)

Register here!

HAEA Virtual Meet & Greet Events

HAEA Virtual Meet & Greet Events

Network with other HAEA members from your community! The HAEA Virtual Meet & Greet Events are a perfect way to reach out and get to know others affected by HAE in your area. If you are interested in participating in an HAEA Virtual Meet & Greet, please check out the HAEA Events Calendar, or reach out to Mike Mallory at

What would you tell someone who is considering attending a future HAEA Meet & Greet?

“ The Information gained in these meetings can change your outlook on life.” --John F.

Tuesday, November 16th, 6:30 ET - PA, DE, MD, DC

Tuesday, December 14th, 6:30 ET - GA and FL

Register today to receive a FREE HAEA swag bag after the event!

For more information, please contact Mike Mallory at or 513-858-9370.

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 © (2021) 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