US Hereditary Angioedema Association


IN THIS ISSUE
2023 Legislative Update and Welcome to Congress 2023 US HAEA National Summit Support Groups HAEA Community Blog	HAE Speaks Podcast #BeyondHAE Youth Podcast Clinical Trial Updates HAEA Events Calendar Social Media Snapshots

Welcome to Congress: Grassroots Network Training Webinar

We cordially invite you to participate in the Welcome to Congress webinar on Thursday, March 16th, at 7:00 PM ET / 4:00 PM PT! Learn about this year’s congressional agenda and how it could advance the HAEA legislative priorities to protect the rights of people with HAE.

This webinar will cover:

Congress's new priorities,
Issues that will impact the HAE community in 2023, and
What you can do to participate in the HAEA advocacy program.

This event is open to any HAEA community members who want to advocate for people with HAE. You don’t want to miss it!

Welcome to Congress Youth Training

Join us on April 17th at 7 PM ET/ 4 PM PT to learn how to introduce yourself to your elected officials and share why the Hereditary Angioedema community is important. Your legislators will be eager to hear about your experience, and our Welcome to Congress letter will invite them to take action to support HAE research and awareness. This event is for HAEA youth members ages 12-25.

The 2023 US HAEA National Summit is only a few months away!

As announced, the 2023 US HAEA National Summit will be held in Orlando, Florida, from July 20 - 23, 2023.

The Summit theme for 2023— ‘Living Beyong Boudaries’—will frame a program that provides a sense of the past, a realistic assessment of the present, and a positive look to the future. This HAEA gathering will offer an innovative format and unique programs that further unite our HAE community and guarantee a memorable and empowering experience for all.

The 2023 Summit registration will be open until March 31, 2023, for the HAE community. You don’t want to miss this important and educational event.

NOTE: To receive a grant, you must agree to attend all SUMMIT sessions. Ushers at the SUMMIT will scan badges before each session to record attendance.

March HAE Heroes Connecting Topic - Patient and Caregiver Safety

How do you define “safety?” This month our HAE Heroes Connecting virtual support groups will talk about ways to be physically and emotionally safe.

The HAE Heroes Connecting virtual support groups are held once a month through Zoom. Join us next month when we talk about recognizing and managing stress.

These group meetings are opportunities for HAE community members to share their experiences and offer support to others. Interested in joining one of these monthly support groups? Contact the HAE Health Team for more information by calling 866-798-5598 or emailing an advocate at troyce@haea.org and adinaramsey@haea.org.

Living with an unpredictable chronic disease like Hereditary Angioedema (HAE) can cause setbacks in one’s life. In this month’s HAEA Community Blog article, Karissa, a young individual with HAE, describes how she was able to overcome obstacles and live her dreams.

“I encourage everyone to dream despite your HAE. Do that project, try that new thing, or make a new friend! You never know where your experiences will land you or the new passions they might spark.”

Access the HAEA Community Blog today and read Dream Despite HAE by clicking 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!

Podcasts

HAE Speaks Podcast - Episode 34: Lora shares her HAE journey as well as how she spreads HAE awareness nationwide.

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 - #BeyondHAE Digging Deeper Interview Series: I am a young adult with HAE (Mariel)

Youth Podcast series

This month's episode is hosted by Youth Leadership Council member, Kobe, who interviews Mariel, a young woman with HAE who talks about growing up with unexplained symptoms and her journey to finally getting a diagnosis in her 20s. Mariel shares how she has adjusted her outlook on life to find the positive in being part of the rare disease community. This episode is now available to watch in video format on Spotify.

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 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.

The OASIS-HAE and OASIS-HAE Plus Studies

The US HAEA is currently assisting IONIS in recruiting people with HAE for the OASIS-HAE and OASIS-HAE Plus studies. The OASIS-HAE study is a Phase 3 worldwide placebo-controlled trial, and the OASIS-HAE Plus trial is a Phase 3 open label trial (medicine is provided, there is no placebo) which aim to determine whether its study drug (called donidalorsen) is safe and effective at reducing or preventing HAE attacks.

To qualify for the OASIS-HAE and the OASIS-HAE Plus studies, 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.

KONFIDENT Study

The US HAEA is currently assisting Kalvista in recruiting people with HAE for the KONFIDENT study, a Phase 3 worldwide 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

Upcoming HAE Heroes Connecting Support Groups:

Tuesday, March 21st, 2023 - 10:00 PM ET
Wednesday, April 5th, 2023 - 7:30 PM ET
Thursday, April 13th, 2023 - 11:00 AM ET

If you are interested in joining a virtual support group, please contact Troyce Venturella at troyce@haea.org or Adina Ramsey at adinaramsey@haea.org

Welcome to Congress: Grassroots Network Training Webinar

Date: Thursday March 16th, 2023
Time: 7:00 PM ET / 4:00 PM PT
Speakers: Tony Castaldo (US HAEA President & CEO) and Dane Christiansen (Health and Medicine Counsel of Washington)

HAEA Treatment Education Series Webinar: Re-treating? Let's talk about it. (VIRTUAL)

Date: Wednesday, March 29, 2023
Time: 7:00 PM ET / 4:00 PM PT
Speakers: Raffi Tachdjian, MD, MPH, and Jason M. (CSL Behring Patient Advocate)
Sponsored by: CSL Behring
Link Webinar: https://haea.zoom.us/j/87807768375
Phone: +1 646 558 8656 (Webinar ID: 878 0776 8375)

In-person - Cincinnati Dinner Event

Date: Thursday, March 30, 2023
Time: 6:30 PM ET
Location: Trio Bistro 7565 Kenwood Rd, Cincinnati, OH 45236
Guest Speaker: Jonathan Bernstein, MD
Register today and receive a FREE goodie bag for attending! You can register HERE!

Virtual event - Parents & Caregivers

The US Hereditary Angioedema Association invites parents and caregivers of children, teens, and young adults to join us for an informative and interactive Virtual Meet and Greet experience on Tuesday, April 11th at 4:00 PM PT / 7:00 PM ET.

Date: Tuesday, April 11, 2023
Time: 7:00 PM ET / 4:00 PM PT
Guest Speaker: Lisa Chacon-Fiermonte (Mother of teen with HAE)
Location: Virtual event

For more information about HAEA Meet and Greet events, please contact Lisa Facciolla at lisa@haea.org or (619) 723-7747.

Welcome to Congress Youth Training

Date: Monday, April 17th, 2023
Time: 7:00 PM ET / 4:00 PM PT
Location: Virtual event
Guest Speaker: Dane Christiansen (Health and Medicine Counsel of Washington)

Social Media Snapshots

Don’t miss the latest HAEA news and announcements, connect with us on social media!

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Update your HAEA membership information HERE!


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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.