Meet New Members of the HAE Community at our Virtual Meet & Greet!

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

The US HAEA invites new members to join us for an informative and interactive Virtual Meet and Greet experience on Tuesday, June 6th at 4:00 PM PT / 7:00 PM ET.

Our Health Team will be available to discuss our many programs and services and answer any of your HAEA-related questions regarding:

• diagnosis,
• available treatments,
• clinical trials,
• insurance, reimbursement and financial assistance challenges, and
• HAEA virtual support groups.

Register HERE!

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HAE Heroes Connecting: May Topic - Celebrating HAE day :)

This month our HAE Heroes Connecting virtual support groups will celebrate what hae day :-) means to us and how advocacy can be empowering.

You can find the dates and times of the upcoming HAE Heroes Connecting virtual support groups in the HAEA Events Calendar section below.

The HAE Heroes Connecting virtual support groups are held once a month through Zoom. Join us next month when we talk about self-care in the great outdoors!

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.

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What does hae day :-) mean to you? We asked members of the HAEA community, as well as HAEA staff members, to reflect on what hae day means to them and to share their best experience or memory with hae day :-). Take the time this month to appreciate how far we have come as a community!

Access the HAEA Community Blog today and read The Importance of hae day :-) 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!

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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.

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The ALPHA-STAR Trial

The US HAEA is currently assisting Astria Pharmaceuticals in recruiting people for the ALPHA-STAR trial, a Phase 1 study evaluating a new medicine (STAR-0215) for long acting prevention of HAE attacks. STAR-0215 is delivered subcutaneously once every 3 months or in some cases even less frequently. This trial is not placebo controlled, so each participant will receive the trial medication.

You may qualify for the ALPHA-STAR study if you are 18 years of age or older and diagnosed with HAE Type I or II, have had at least 4 attacks in the past year and are not on preventative therapy. Individuals currently on preventative therapy and interested in participating should consult with their physician to discuss the risks and benefits before discontinuing medication.

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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.

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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!

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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.

Thursday, May 18, 2023 - 7:00 PM ET / 4:00 PM PT

• HAEA Treatment Education Series Webinar: C1-INH Replacement Therapy to Treat the Root Cause of HAE Attacks (VIRTUAL)
• Speaker: Dr. Shahnaz Fatteh (Asthma, Allergy, Immunology Care Center of Florida)
• Sponsored by: Pharming
• Link Webinar: https://haea.zoom.us/j/82957223356
• Phone: +1 646 558 8656 (Webinar ID: 829 5722 3356)

 REGISTER HERE 

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Upcoming HAE Heroes Connecting Support Groups:

• Thursday, May 11th, 2023 - 11:00 AM ET
• Tuesday, May 16th, 2023 - 10:00 PM ET
• Wednesday, June 7th, 2023 - 7:30 PM ET

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

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Tuesday, June 6th, 2023 - 7:00 PM ET / 4:00 PM PT

• HAEA New Member Meet and Greet
• Location: Virtual
• Register here!

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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.