From Digital & Social Media Manager Ianice Viel, US HAEA:

2021 US HAEA Virtual Summit Series: On 16 May 2021, the US HAEA launched its first ever US HAEA Virtual Summit Series. The Virtual Summit Series is being presented in one-day sessions through the summer and ends on 8 August. The virtual format combines engaging live and on-demand events that explore:

  • 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.

HAEi friends interested in accessing the 2021 US HAEA Virtual Summit Series conferences and viewing all of the sessions (recorded and available on-demand), can register by visiting  

The 2021 US HAEA Virtual Summit Series kicked off with over 1,000 HAEA friends celebrating hae day :-) during a live session featuring US HAEA President, Tony Castaldo, who moderated discussions with:

  • Dr. Bruce Zuraw regarding progress and challenges in the world of HAE, and  
  • HAEA leaders who shared details of available programs, activities, and services. 

The June event features a live plenary session which will enable participants to ask US HAEA Medical Advisory Board members questions about care and treatment options for HAE. This program will include a live breakout session on women and HAE. 

Additionally, a series of pre-recorded programs cover a diverse range of relevant topics that include: 

  • Coping during the COVID-19 pandemic,
  • Grassroots advocacy efforts, 
  • US HAEA Medical Advisory Board 2020 Guidelines for the Management of Hereditary Angioedema, and
  • Exclusive content for HAEA youth, with a particular focus on advocacy training and the publication of its third children’s book, “Nico’s Story“.

The July and August events will focus on new developments with HAE therapies and insurance coverage of HAE medicines. Pre-recorded programming will include an HAEi presentation on access to HAE medicine around the globe. 

US HAEA Expands Research Portfolio: The US HAEA continues its robust research program and is embarking on timely and relevant projects that will focus on the unique needs of the HAE community including: 

  • An HAEA/HAEi-initiated study, published on 1 March 2021, in a peer-reviewed medical journal demonstrated the clear economic value and improvement in quality of life offered by HAE medicines,
  • The US HAEA Medical Advisory Board Guidelines for the Management of HAE are available and provide evidence-based recommendations for the diagnosis and treatment of HAE,  
  • An HAE Primer, published in a prestigious medical journal, that provides non-HAE expert medical professionals an overview on the condition,  
  • A study, submitted to a medical journal, that included 1,600 participants, and assesses how the COVID-19 virus affects people with HAE, 
  • Surveys focused on insurance challenges affecting the HAEA community. This important data is being used to prepare guidebooks on navigating insurance challenges. These guidebooks will be available for both physicians’ offices and people with HAE in the fall of 2021.

Moving into 2021, the US HAEA plans to continue to actively pursue innovative and ground-breaking research. We are currently developing a Shared Decision-Making tool that will enable physicians and people with HAE to work together when making healthcare decisions, ensuring that both the physician and the person with HAE have a voice in their treatment plan. We are also launching an Epidemiological Study to establish the true prevalence of HAE in the US.  

Additionally, we are making progress on a study on HAE in Aging, which will help to better understand the demographic and clinical characteristics, HAE treatment patterns, HAE impact and burden, and perceived health-related quality of life (HRQoL) of the aging HAE population. This study is being designed with a comparator population of people without HAE, and we plan to have these results published in a manuscript when complete in early 2022. This research project is uniquely important to the HAEA community, as current data on HAE in ageing does not exist.

Finally, we are collaborating with HAEi to develop a new questionnaire that offers a more comprehensive measurement of how dealing with a chronic condition like HAE affects quality of life.  

New US HAEA website: We have recently unveiled our new website at The newly redesigned format is user friendly and provides easier access to: 

  • Breaking HAE news,
  • Educational materials, including successfully managing HAE, 
  • Information regarding FDA-approved treatments and ongoing clinical trials,
  • Ways to connect to the broader HAEA community, and 
  • Information about the HAEA’s programs, services, and activities.

The new website also provides sections tailored to specific groups, such as parents of children with HAE and people who are newly diagnosed. All content is available in English and Spanish. 

The 2021 HAE IN-MOTION® Virtual Challenge: Hundreds of HAEA friends and families are counting their steps to raise awareness for HAE through the 2021 HAE IN-MOTION® Virtual Challenge.  

Summer is the perfect time to get active. HAEA members are taking advantage of the warm weather to enjoy the fresh air while raising funds for three key US HAEA programs that directly impact community members:

  • The Pam King HAEA Scholarship Program, which offers college tuition grants to HAE patients,
  • The Chris Whalen HAEA Compassion Fund, which offers financial assistance for patients in need who must travel to see an HAE medical specialist, and
  • The HAEA Research Fund, which supports a variety of research initiatives including the HAEA Scientific Registry.

The 2021 HAE IN-MOTION® Virtual Challenge started 14 June and goes on until 31 July 2021. 

The Virtual Challenge is an event for participants from the United States and Puerto Rico who can register at

US HAEA launches Continuing Medical Education (CME) Program for Healthcare Professionals: The US HAEA is committed to providing healthcare professionals with authoritative information that results in the best care and quality of life for the HAE community. That is why we collaborated with the Postgraduate Institute for Medicine, and RMEI Medical Education, LLC, to develop a CME Program course focused on the 2020 US HAEA Medical Advisory Board Guidelines for Managing HAE. The one-hour course is designed to meet the educational needs of healthcare professionals involved in the diagnosis and/or management of patients with HAE.