Thanks to you, the 2022 HAE IN-MOTION® - Step it Up for HAE Event Was A Huge Success!
This summer, members of the HAE community embraced our challenge to Step it Up for HAE, and raised awareness through our 2022 HAE IN-MOTION® event!
With over 700 participants and 28,392 miles tracked the HAEA community came together to take action for HAE!
All funds raised will support key HAEA programs including the Pam King HAEA Scholarship Program, the Chris Whalen HAEA Compassion Fund and the HAE Research Fund.
We cannot wait to see you at the next HAE IN-MOTION® event!
For a complete list of HAEA events, visit the events page at haea.org.
The Pam King HAEA Scholarship Program is Now Accepting Applications for the Spring 2023 Semester!
Are you planning to attend a college or university in the Spring of 2023? The HAEA helps students with a confirmed HAE diagnosis attain 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 college students with HAE to take advantage of this opportunity. Complete an application before September 30, 2022.
Use Your Voice to Support the
HELP Copays Act!
Due to the high costs associated with having HAE, many people rely on charitable assistance to help them pay for insurance premiums and medical co-payments. The HELP Copays Act would protect access to certain types of patient assistance programs, relied upon by many in the HAE community. The bill accomplishes this by mandating that financial assistance from charities and other third-parties are counted towards a patient’s out-of-pocket maximum.
Ask your representatives in Congress to support the HELP Copays Act today! Send our pre-written letter to your Senators and House representatives to support this bill.
The HAEA has your Back for Back to School!
Back to school season is quickly approaching and the HAEA wants you and your child to be equipped with all the information and tools you need to create an HAE emergency plan for your child. We developed an informative webinar brief to outline the resources that are available to you, and provide some first hand tips on how to plan for success while attending school and managing HAE.
Click HERE to check out the webinar!
Women with HAE
Did you know that hormonal fluctuations associated with puberty, pregnancy, or menopause can affect your HAE?
The HAEA developed the Guide for Women with HAE to provide information regarding the unique challenges faced by women with HAE. The HAEA collaborated with HAE expert physicians to develop an authoritative resource that includes frequently asked questions, stories from patients, and relevant source material.
Studies reveal that HAE symptoms are more severe in women than men. We have created this resource to help women with HAE navigate three specific life stages:
1) pediatrics through puberty
2) family planning and pregnancy
3) menopause and aging
Order your copy of the Guide for Women with HAE today for FREE here.
Connect with Dr. Riedl and HAE Advocate Lisa Facciolla on Tuesday, August 23 at 7:30 PM ET, for the third and final webinar event in the Women and HAE series that will address menopause and aging. The webinar will feature an engaging Q&A format focusing on how women can manage HAE during this stage of their life.
We invite you to submit questions in advance to Lisa Facciolla at lisa@haea.org.
Did you miss the first two webinars? No worries! Click here to watch the recordings.
For more information or questions about the Guide for Women with HAE or the Menopause and Aging webinar, please contact Lisa Facciolla at lisa@haea.org.
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Health Team Update |
Did you know that the HAEA Health Advocates can help with your insurance denials and appeals?
Are you having a hard time getting your HAE medications? We understand how the stress of insurance denials and appeals can affect frequency of HAE swelling episodes and your mental health. We are here to help you through this tough time.
The HAEA offers assistance with medication denials and appeals. If you need help with accessing your HAE medications, reach out to our compassionate health team today at (877) 839-4232.
HAEA Healthcare Hero Recognition Program
The US HAEA is now accepting nominations for HAEA Healthcare Hero Awards!
August is Healthcare Hero Recognition month! Healthcare professionals who go out of their way to provide us with an extraordinary level of kind and compassionate care are helping to improve the health and wellbeing of people with HAE. These healthcare heroes deserve recognition for their consistent and positive impact on improving our quality of life.
Recognize your favorite physician, nurse, physician’s assistant, or healthcare team today!
HAEA Healthcare Heroes will be randomly selected to be recognized on our social media platforms and will receive an award for their office or desk as well as a certificate of appreciation.
For more information, please contact HAE Advocate, Mike Mallory, at mikemallory@haea.org.
Read the newest HAEA Community Blog article: It Can't Rain All The Time: My Experience With HAE and Mental Health featuring Derek, an individual with HAE.
"It's easy to remember the bad days. It's easy to use your illness as an excuse for not meeting your goals. But do your best to change that thinking."
Access the HAEA Community Blog today and read the rest of Derek’s story here.
Contact HAE Advocate, Hannah Carroll at hannah@haea.org for more information!
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Podcasts |
HAE Speaks Podcast
Download and listen to HAE Speaks, a podcast where people with HAE get the chance to broadcast their stories to the world! HAE Speaks allows you to freely share with, and learn from, experiences managing HAE presented by our monthly hosts. You can download HAE Speaks on Apple Podcasts, Spotify, or wherever you listen to your podcasts!
Episode 28: In this episode of the HAE Speaks podcast, Troyce provides insights on HAE management that are relevant to parents with children who are going back to school, covering kindergarten and all levels including college.
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.
#BeyondHAE Youth Podcast - I Use Social Media to Advocate for HAE (Maddie)
This month's episode is hosted by Maddie, who talks about how she uses social media to raise awareness and advocate for HAE.
#BeyondHAE is the only podcast made exclusively by and for young people with HAE. Listen to #BeyondHAE to hear different perspectives of how you can live a normal life with HAE.
#BeyondHAE is available to download on Apple Podcasts, Spotify, or wherever you get your latest podcasts!
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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.
CSL312 Study
The US HAEA is currently assisting CSL Behring in recruiting people with HAE for the CSL312_3002, a worldwide clinical research study to investigate the safety and effectiveness of Garadacimab, an investigational subcutaneous medication given once a month to prevent Hereditary Angioedema (HAE) attacks. In this study, doctors will be evaluating the long term use of garadacimab.
The trial is currently fully recruited for adult participants, however, a few more adolescent participants (ages 12 - 17) are needed to meet the required numbers.
CSL312_3002 is an open label study with no placebo phase required, which means that all participants will receive garadacimab for at least one year.
CHAPTER-1 Study
The US HAEA is currently assisting Pharvaris in recruiting people with HAE for a clinical research study to investigate the safety and effectiveness of an investigational oral drug for prophylactic use of Hereditary Angioedema (HAE) attacks. In the CHAPTER-1 study, doctors will be evaluating the effectiveness of PHVS416 as a potential oral treatment to prevent HAE attacks.
To qualify for the CHAPTER-1 study, participants must be diagnosed with HAE Type I or II and be between the ages of 18 and 75 years old, with at least 3 attacks in the last 3 months or 2 qualifying attacks during the screening period. The use of an approved on-demand medication to treat acute attacks is permitted.
The OASIS Study
The US HAEA is currently assisting IONIS in recruiting people with HAE for the OASIS-HAE study, a Phase 3 worldwide placebo-controlled trial, which aims to determine whether its study drug (called donidalorsen) is safe and effective at reducing or preventing HAE attacks.
Participants may be eligible to participate in an open-label extension study at the end of the OASIS-HAE study, where all participants receive donidalorsen.
To qualify for the OASIS-HAE study, participants must be 12 years of age or older with a documented diagnosis of HAE. Participants must experience at least two attacks during the screening period, and have access to, and the ability to use at least one or more acute medications to treat HAE attacks.
KOMPLETE Study
The US HAEA is currently assisting Kalvista in recruiting people with HAE for the KOMPLETE study to understand the effects of an investigational oral medication called KVD 824-201.
The KOMPLETE study is a placebo-controlled trial where doctors are studying three different doses of KVD 824-201 to assess which one may work best as a safe prophylaxis treatment for HAE attacks. To qualify for the KOMPLETE study, participants must be 18 years of age or older; diagnosed with HAE Type I or II; have access to an on-demand medication to use for HAE attacks; and be willing to use a study-approved method of birth control during the 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.
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HAEA Events Calendar |
• Tuesday, August 16, 2022, 6:30 ET
HAEA Meet & Greet (VIRTUAL)
REGISTER NOW
• Thursday, August 18, 2022, 7:00 PM ET
HAEA Treatment Education Series Webinar: A deeper dive into HAE types. Let’s talk about it. (VIRTUAL)
Speaker: Maeve O’Connor, MD
Sponsored by: Pharming
Link Webinar: https://haea.zoom.us/j/85187051140
Phone: +1 646 558 8656 (Webinar ID: 851 8705 1140)
REGISTER NOW
• Tuesday, August 23, 2022, 7:30 PM
Guide for Women with HAE Webinar: Menopause & Aging (VIRTUAL)
REGISTER NOW
• Wednesday, September 14, 2022, 6:30 CT
Chicago HAEA Meet & Greet (IN-PERSON)
REGISTER NOW
• Tuesday, September 20, 2022, 6:30 ET
HAEA Meet & Greet (VIRTUAL)
REGISTER NOW
• Tuesday, October 11, 2022, 6:30 PM ET
HAEA Round Table: For BabyBoomers with HAE - How Does HAE Affect Aging?
Participate on Facebook Live - US HAEA Page
• Tuesday, November 1, 2022, 6:30 PM ET
HAEA Round Table: For Caregivers and Parents - What is the Best Way to Support Someone with HAE?
Participate on Facebook Live - US HAEA Page
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Fairfax City, VA 22030
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CONTACT AN HAE ADVOCATE:
(877) 839-4232
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JOIN HAEA
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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 © (2022) 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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