From Digital & Social Media Manager Ianice Viel, US HAEA

hae day :-) 2021: The US HAEA is excited to announce our plans for the celebration of hae day :-) 2021. We are thrilled to be a part of the HAEi campaign for the 10th anniversary of the global HAE awareness day and all of our activities will be converted into steps in support of the global virtual walk.  

The theme for our hae day :-) activities will be “Take Action for HAE” which involves HAEA members delivering ER toolkits to local hospitals, firehouses, and first responders in an effort to educate the public about HAE. Our ER Toolkit is an educational resource for medical professionals that contains a Pocket Guide with disease state information, a poster for a quick reference regarding symptoms and treatments, and information on our free, accredited CME course, among other items. Along with the ER Toolkits, we have produced an EMS educational video to quickly and comprehensively explain the symptoms and treatment of HAE to the public. 

hae day :-) 2021 will engage members of our community in high impact activities to ensure that medical professionals, particularly emergency care teams, have sufficient information to successfully deal with critical, potentially life-threatening symptoms often faced by people with HAE.  

US HAEA Meet and Greet Events: We are proud to host a series of virtual Meet & Greet events for HAEA youth and adults that offer an opportunity to connect with peers while learning about what the HAEA has planned for them in 2021. People affected by HAE have found the HAEA Virtual Meet & Greet events to be incredibly educational and enjoyable. The HAEA Virtual Meet & Greet Events are a perfect way to reach out and meet others affected by HAE.

“I always love the meet and greets. I get new information from them each time. Please go to gain knowledge, ask questions, meet others just like you!” – Aysha B.

Advances in HAE Research: We are working hard on many fronts to sponsor research to improve the quality of life of people with HAE. We are pleased to share with you an overview of current research initiatives:

HAEA/HAEi Health Economics Study Demonstrates the Value of New HAE Preventive Medicines

A study of HAE medicines published by a group of economists who receive funding from the insurance industry concluded that new preventive HAE medicines are not cost effective. The HAEA questioned the methods and conclusions of this study and responded by initiating a comprehensive analysis to determine the financial and quality of life impact of the new preventive medicines. Almost 800 people with HAE participated in the study, and the results point to a drastically different reality from the economists’ study. The data reveals that the new preventive therapies yield (1) substantial economic value in light of remarkable decreases in attack frequency, and (2) statistically significant improvements in patient quality of life. After an extensive peer review, the paper is now published, and available in print and free online at 

Hereditary Angioedema Primer

The HAEA joined forces with the prestigious medical journal Allergy and Asthma Proceedings and expert HAE physicians to develop a special supplemental edition on HAE diagnosis and management. The supplement was published in the journal’s 1 November 2020 edition. It contains 14 peer reviewed articles on vitally important HAE topics and has been mailed to over 40,000 health care providers, including a targeted list of allergy-immunology fellows and specialists in training. HAEA members have free access to the supplement here: 

US HAEA Medical Advisory Board 2020 Guidelines

The US HAEA Medical Advisory Board 2020 Guidelines for the Management of Hereditary Angioedema have been published and are downloadable from the Journal of Allergy and Clinical Immunology – In Practice, at

The guidelines provide the US medical community with a comprehensive scientific overview of HAE in all its forms (type 1, type 2, and HAE with Normal C1-Inhibitor) and offer best practices that emphasize the importance of the patient voice in determining an optimal treatment approach. The document embodies a consensus of prominent HAE physician scientists in the US and will be used as an authoritative source for treatment related questions raised by health insurers.

US HAEA and Angioedema Center at UCSD Study of COVID-19

The US HAEA and the US HAEA Angioedema Center at University of California at San Diego have conducted a survey with 1,400 respondents that included people with HAE and members of their household. The study is designed to 1) help determine if people with HAE are at greater risk of contracting COVID-19 or, if infected by the virus, manifest symptoms different from those seen in the general population, and 2) provide data regarding the impact, if any, of HAE medicines on the susceptibility to, or course of, a COVID-19 infection. The ultimate goal of the study is to safeguard our community’s well-being by understanding the interaction between HAE and the virus. The results of this survey, which have been submitted to a peer reviewed medical journal, will help medical professionals develop the best treatment options and protocols for people with HAE who are afflicted with the virus. 

HAEA Study of Insurance Reimbursement Challenges Faced by People with HAE

The HAEA has completed a major research initiative designed to help people with HAE and their prescribing physicians obtain insurance reimbursement for HAE medicines. To understand all aspects of the issue, we conducted detailed surveys of people with HAE and reimbursement specialists in the offices of prescribing physicians. We also conducted structured interviews with a representative sample of health insurers to gather their perspectives on HAE medicines. Based on this data, we have prepared guidebooks to help navigate the complex and often frustrating process for obtaining reimbursement for HAE medicines in the US. Separate guidebooks will soon be available for people with HAE and physicians who prescribe HAE medicines.

Continued HAEA Investment into Research for HAE with Normal C1-Inhibitor

The HAEA is dedicated to supporting the important members of our community who suffer from swelling that is not caused by a deficiency in C1-Inhibitor. We recognize that a sharpened scientific understanding of HAE biology and genetics is the first step in developing new and more effective treatments. That is why we support the search for genetic causes and biomarkers that define HAE with Normal C1-Inhibitor. Scientists at the US HAEA Angioedema Center at UCSD now have in-house genetic testing for several genes that are believed to be implicated. Physician scientists at the Center are committed to expanding the knowledge of this condition and working tirelessly to the development of suitable treatments.

Therapies in the Horizon: We have good news to report as we start the new year. The FDA has approved BioCryst’s Orladeyo in the US – the first oral treatment for preventing HAE attacks that is not an anabolic steroid. In addition, the FDA approved Haegarda (C1 Esterase Inhibitor Subcutaneous [Human]) in preventing HAE attacks in pediatric patients six years of age and older. Takeda is still recruiting for its clinical trial testing the effectiveness of Takhzyro for HAE with normal C1-Inhibitor, and as many as three other companies will start clinical trials for new HAE therapies at some point during the year.

Despite being faced with a lifetime of daunting challenges, people with HAE have always found a way to overcome obstacles and achieve a positive outcome. This “can do” approach to life will undoubtedly be on display in our community throughout 2021. The global HAE community continues to attract significant interest in developing new therapies. Interest in HAE clinical research continues to be strong. 

Nine companies are in the process of developing new HAE treatments. These include:

  • Four oral pill therapies
  • A new monoclonal antibody treatment
  • Three prospective gene therapies
  • A treatment based on an antisense technology

You can learn more about these developing treatments by listening to Episode 3 of the HAE Speaks Podcast: Ongoing Research for New HAE Treatments of the HAE Speaks Podcast, hosted by HAEA President and CEO, Tony Castaldo. Listen on Spotify or Apple Podcasts or go to

2021 US HAEA Virtual Summit Series: We are pleased to announce the 2021 US HAEA Virtual Summit Series, which will take place May-August 2021. Although we cannot meet in person, the Virtual Summit will offer a comprehensive program that will cover:

  • challenges faced by our HAE community,
  • exciting ongoing HAE research,
  • special youth programs, and
  • information that will help you evaluate your personal situation and explore alternatives to improve your quality of life.

The 2021 US HAEA Virtual Summit Series will be presented in one-day events throughout the Summer, beginning on hae day :-) 2021, and will offer engaging live and on-demand events.

2021 Virtual Summit Series Calendar of Events:

Sunday 16 May 2021: 7:00 PM EST – hae day : -) Take Action for HAE 

Wednesday 16 June 2021: 7:00 PM EST – Ask the Experts – US HAEA Medical Advisory Board 

Wednesday 14 July 2021: 7:00 PM EST – Currently available HAE therapies and those on the horizon 

Wednesday 18 August 2021: 7:00 PM EST – Navigating Insurance Coverage for HAE Medicines 

To register for the 2021 US HAEA Virtual Summit Series please visit