Are You Ready for Health Insurance Open Enrollment?
The HAEA Health Team is available to help you evaluate options and find health insurance that 1) best suits your needs, and 2) covers your HAE therapies.
If you need help researching and/or selecting an insurance plan, please reach out to our compassionate Health Team today at 866 798-5598.
The HAEA Has Your Back for Back to School!
Back to school season is here and the HAEA wants you and your child to be equipped with all the information and tools needed for a successful academic experience. Check out our informative webinar brief that offers:
- Details on how to create a school packet that provides school staff with important HAE related information
- Relevant medical education for the school nurse
- A plan to address any special needs or accommodations
- Tips to help students prepare for college
The Pam King HAEA Scholarship Program: Apply Now 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.
Read the newest HAEA Community Blog article: Becoming In Tune With Your Body and Triggers: How my HAE Attack Hinted at Appendicitis, written by HAE community member, Hannah C.
"While I didn’t understand it then, learning to be in tune with my body and my HAE ultimately revealed something unexpected that resulted in a drastic medical change in my life."
Access the HAEA Community Blog today and read the rest of Hannah’s story here.
Would you like to share a unique story or opinion about your HAE? The HAEA Community Blog is the perfect venue to share your story in your own words with other members of the HAE community. You can share your story HERE!
HAEA Healthcare Hero Recognition Program
Throughout 2022, the US HAEA is spotlighting HAE treating physicians who have made an impact within the HAE community.
This month, we are recognizing HAE treating physician, Maeve O'Connor, MD!
"I always knew I wanted to be a doctor but wasn't sure what kind. When I started to study immunology, I realized that all major illnesses are due to immune dysfunction of one type or another. I describe the immune system as a complicated symphony of moving parts, and I love the sound of that music! I also love taking care of all age patients in a sub specialized field. From my first introduction to immunology and this sub field, I've been motivated to learn, grow, teach others in the medical field, and most importantly, treat those special patients who are immunocompromised."
Thank you Dr. O'Connor for your dedicated service to the HAE community!
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Podcasts |
HAE Speaks Podcast
Episode 29: In this episode of the HAE Speaks podcast, Bobbi shares her journey with HAE, beginning with her diagnosis and eventually becoming a caregiver. Find out how Bobbi and her girls are living a great life with HAE.
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 - Preparing for Back to School
Back to school season is an important time for all youth, but for kids with Hereditary Angioedema, this time of the year also means educating new teachers about HAE, creating an emergency plan in case an attack happens at school, and managing the stress that comes with a new schedule and new expectations. In this episode, we review the collection of useful resources available to help kids and families during this time and we meet former student, Hannah, who speaks openly about how she managed her HAE while in school. We have linked several of the resources discussed in the description of this episode. We hope you find them useful.
HAE Speaks and #BeyondHAE are 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.
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 & KONFIDENT Studies
The US HAEA is currently assisting Kalvista in recruiting people with HAE for the KOMPLETE & KONFIDENT Studies.
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.
The KONFIDENT study is a placebo-controlled trial where doctors are studying two different doses of KVD 900-301 to assess which one may work best as a safe on-demand treatment for HAE attacks. To qualify for the KONFIDENT study, participants must be 12 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 |
• Wednesday, September 14, 2022, 6:30 PM CT
Chicago HAEA Meet & Greet (IN-PERSON)
REGISTER NOW
• Tuesday, September 20, 2022, 6:30 PM ET
HAEA Meet & Greet (VIRTUAL)
REGISTER NOW
• Thursday, September 29, 2022, 7:00 PM ET
HAEA Treatment Education Series Webinar: No Matter What Stage of Life, The Right Therapy Matters (VIRTUAL)
Speaker: Cristine Radojicic, MD
Sponsored by: CSL Behring
Link Webinar: https://haea.zoom.us/j/87683636334
Phone: +1 646 558 8656 (Webinar ID: 876 8363 6334)
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 October 18, 2022, 6:30 PM CT
HAEA Meet & Greet (VIRTUAL)
REGISTER NOW
• 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
• Tuesday, November 15, 2022, 6:30 PM ET
HAEA Meet & Greet (VIRTUAL)
REGISTER NOW
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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 © (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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