US Hereditary Angioedema Association


IN THIS ISSUE
2023 hae day :-) Celebration Parents and Caregivers Virtual Meet and Greet HAEA Youth Advocacy Network Welcome to Congress Training Share Your Impactful Memories with Lois Perry!	Support Groups HAEA Community Blog: Adina Clinical Trial Updates HAEA Events Calendar Social Media Snapshots

Be part of the exciting 2023 hae day :-) celebration!

May 16th is hae day :-). Join the HAEA community in raising awareness and demonstrating our strong commitment to HAE advocacy by taking part in a fun, powerful, yet simple activity to commemorate hae day :-)!

You will soon be receiving a hae day :-) poster in the mail from the HAEA. Once you receive your poster you can follow these 4 simple steps to participate:

Showcase your poster! Use the poster to raise HAE awareness on hae day :-).
Select your message! The two-sided poster has a general message on one side, but you can personalize it if you like by using the other side. You can also download your preferred flier in PDF format and print at home to place on your poster. Download the flier HERE.
Snap a photo! Take a photo of you and your loved ones with the poster. You can even wear your favorite HAE swag in the photo!
Take action! Upload your photo to our hae day :-) photo wall HERE and/or post to social media using the hashtag #haeday2023.

Upload your photos to the HAEA website here

Parents & Caregivers Virtual Meet and Greet is happening TONIGHT!

Connect and chat with other parents and caregivers in an engaging, informative and compassionate discussion about HAE challenges and triumphs.

The US HAEA 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.

Join us from the comfort of your home as we discuss resources and services that are available to assist and support families as they navigate life with HAE. HAEA staff will be on hand to answer questions and offer guidance on the topics discussed.

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

The 118th U.S. Congress is now in session, and it is critical that our elected representatives understand your healthcare needs and priorities. Join us on April 17th at 7:00 PM ET/ 4:00 PM PT to learn how to communicate with your member of Congress and discuss the issues that are important to people with HAE. Your legislators will be eager to hear from you. This event is for HAEA youth members ages 12-25.

Share impactful memories of how Lois Perry helped you or your family cope with HAE!

After many years of selfless and dedicated service, Lois Perry retired last year. Lois has been an integral part of the community since the HAEA was founded in 1999. She has had an immeasurably positive impact on the lives of people with HAE and their caregivers.

We will honor Lois at the HAEA National Summit in July, and cordially invite you to share any memories or photos that illustrate her personal touch in helping you or your family cope with HAE.

Please help us honor Lois by sharing your photos along with stories of how she has helped by using this link: https://www.haea.org/autoforms/f/267

April HAE Heroes Connecting Topic - Recognizing and Managing Stress

We can’t fully erase stress, but we can learn to manage it and minimize its impact. For the month of April, our HAE Heroes Connecting virtual support groups will explore tools to recognize the signs of stress, and self-care practices to counter it.

The HAE Heroes Connecting virtual support groups are held once a month through Zoom. Join us next month when we talk about celebrating hae day :-)!

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 adinamauk@haea.org .

HAE affects your physical health as well as your mental and emotional well-being. Learn from Adina, an individual with HAE, who shares her experience with managing the emotional toll that can come with living with a chronic disease.

“Survival mode is a natural response to stress and is bound to come up again at some point, but I don’t have to stay there. Now I feel like I can transition from surviving to thriving.”

Access the HAEA Community Blog today and read Stuck in Survival Mode 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!

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 and OASIS-HAE Plus studies are evaluating the safety and effectiveness of an investigational subcutaneous preventive medicine called donidalorsen, which is given either once every 4 or 8 weeks. The studies are enrolling participants 12 years of age and older. This investigational drug uses a technology called antisense, which targets the kallikrein generating system using messenger RNA to suppress the protein that produces kallikrein.

The OASIS-HAE Study is a Phase 3 worldwide placebo-controlled trial, and the OASIS-HAE Plus Study is an open-label extension study without placebo.

To qualify for the OASIS-HAE or 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.

Adolescents aged 12 - 17 are needed for this trial. If you know of an adolescent who would benefit from participation in the KONFIDENT study, please reach out to an HAE Advocate for more information!

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.

HAEA Events Calendar

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 Council of Washington)

Tuesday, April 18th, 2023 - 6:30 PM ET

HAEA Round Table: Generation X (VIRTUAL)

Watch on the US HAEA official Facebook page here!

HAEA Treatment Education Series Webinar: Choosing the Path of Prevention: TAKHZYRO and Children (VIRTUAL)

Date: Thursday, April 27th, 2023
Time: 7:00 PM ET / 4:00 PM PT
Speakers: Dr. Joshua Jacobs (HAE Specialist) and Bobbi (Person living with HAE and caring for two daughters with HAE)
Sponsored by: Takeda
Link Webinar: https://haea.zoom.us/j/89426671440
Phone: +1 646 558 8656 (Webinar ID: 894 2667 1440)
Register here!

What is TAKHZYRO?

IMPORTANT SAFETY INFORMATION

Prescribing Information

Upcoming HAE Heroes Connecting Support Groups:

Tuesday, April 18th, 2023 - 10:00 PM ET
Wednesday, May 3rd, 2023 - 7:30 PM ET
Thursday, May 11th, 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 Mauk at adinamauk@haea.org

Social Media Snapshots

Connect with us on social media to catch the latest HAEA news and announcements!

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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.