Español
HAEA In Action Newsletter Facebook Twitter Instagram LinkedIn
IN THIS ISSUE


open enrollment
October is HAE Youth Advocacy Month! Let’s Advocate Together!

October is HAE Youth Advocacy Month and we invite all HAEA Youth members and HAE International Youngsters to help raise awareness by wearing blue for #BeyondHAE!

This year, we’ve made it easier than ever to participate! We invite community members of all ages to post a photo or video of yourself wearing blue. Create a post on how you advocate to educate people in your life about HAE and include what you like to do #BeyondHAE. Make sure to include the #BeyondHAE hashtag so we can share your story!

Take your advocacy a step further by participating in the HAEA Youth Advocacy Workshop on November 9th! You can use your voice to advocate for improved therapies and increased funding for HAE research. Not sure how to go about it? If you are between the ages of 12 and 25, this advocacy workshop is for you!

 Learn More and Register HERE 

All youth who register and attend the workshop will receive a FREE gift bag in the mail that will include a wearable HAE advocate shirt or hat and additional giveaway items.

open enrollment
Mark your calendars - Insurance Open Enrollment starts in November!

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.

Medicare recipients: The Medicare Advantage or Medicare Prescription Drug Plan open enrollment period will run from Tuesday, November 1st until Sunday, January 15th. If you are not satisfied with your current Medicare Drug Plan and want to switch, now is the time to make the change.

ACA (Affordable Care Act): Open Enrollment runs from Monday, November 1st through Sunday, January 15th with coverage beginning on January 1, 2023.

If you miss the deadline to enroll in a plan by January 15th, you cannot receive coverage in 2023 unless you qualify for a Special Enrollment Period.

Employer sponsored plans: Each employer sets their enrollment dates, so it is important to review and research health insurance your company offers to choose a plan that provides the best coverage for you.

Please reach out to your HAEA Health Team for assistance as you review and research your health insurance options.

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) HAE-related questions.

nominate-caregiver
Nominate your caregiver through the HAEA's Caring for Caregivers Program!

Is there a caregiver in your life (family member, friend, significant other, etc.) who has provided an exceptional level of kindness and compassion while helping you manage your HAE?

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

Nominees will receive a gift and kind note to distinguish the care they’ve given to their loved one.

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 lisa@haea.org.



Community Blog
HAE does not discriminate. It affects people of all genders, races, and ethnicities. Hear Kobe’s (they/them) story about their personal journey with HAE and the importance of making sure members of all communities receive trusted health information and are represented in research and patient advocacy.

Access the HAEA Community Blog today and read Kobe’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!

Newsletter icon Podcasts
HAE Speaks Podcast

HAE Speaks Podcast HAE Speaks Podcast - Episode 30: In this episode of the HAE Speaks podcast we hear from HAEA staff member Adina. Adina shares her HAE journey from diagnosis to today.

 Listen Now! 

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 - Commemorating HAE Youth Advocacy Month with a talk about advocacy and awareness

Youth Podcast series This month's episode is all about advocacy and awareness as we head into October and kick off HAE Youth Advocacy Month. We hear from three HAEA Social Media interns, Ally, Gabby, and Morgan who talk about their desire to learn about advocacy. Together they raise awareness about HAE and built lifelong bonds with a community of people who understand their journey. These young women talk about the importance of advocacy and how it's impacted each of them personally.

 Listen to the Podcast here! 

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

Clinical Trial icon 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.


HAERMONY 1 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.

HAEA Events Calendar HAEA Events Calendar

Tuesday, October 11, 2022, 6:30 PM ET
Tuesday, October 25, 2022, 6:30 CT
  • HAEA Meet & Greet (VIRTUAL)
 REGISTER HERE 

Thursday, October 27, 2022, 7:00 PM ET
  • HAEA Treatment Education Series Webinar: Managing an Unpredictable Disease: The Power of Conversation (VIRTUAL)
    • Speakers: John Anderson, MD (HAE Specialist) and Matt (Person living with HAE)
    • Sponsored by: Takeda
    • Link Webinar: https://haea.zoom.us/j/89662767713
    • Phone: +1 646 558 8656 (Webinar ID: 896 6276 7713)
 REGISTER HERE 

Tuesday, November 1, 2022, 6:30 PM ET
Tuesday, November 15, 2022, 6:30 PM ET
  • HAEA Meet & Greet (VIRTUAL)
 REGISTER HERE 

HAEA

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 © (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.