From Patient Advocate/Social Media Manager Ianice Viel, US HAEA:

US HAEA Programs Transition During COVID-19 Pandemic: The COVID-19 pandemic has dramatically altered the way we communicate and connect with one another. At the US HAEA, we understand how vital it is for our HAE community to feel connected despite COVID-19 restrictions. Our commitment to our HAE family is heartfelt, so we have rapidly adapted to offer uninterrupted access to the HAEA Team, as well as our services and programs.

This spring, over 300 people celebrated hae day :-) through a very successful HAEA Virtual Walk that enabled our community to raise awareness and funds via online mediums while keeping active and counting steps at home.

Our annual HAE IN-MOTION® events are popular because they bring friends and family together to raise awareness while engaging in fun, physical activity. This year, we opted to hold our HAE IN-MOTION® event virtually, and in turn, we are now able to not only reach the individual cities of the original events, but to do it simultaneously across the entire United States. The events will be divided into four regions, and we are looking forward to some friendly competition among these, as we have added weekly challenges for them to go head to head to keep things exciting. The 2020 HAE IN-MOTION® Virtual Challenge began on 24 August 2020 with lots of participation and enthusiasm.

We have also transitioned our in-person HAEA Meet & Greet events to an online format. We have already held 15 virtual Meet & Greets, which are wonderful venues to meet members of the HAE community in their area and learn more about HAEA programs and services.

All of our HAEA youth programs are now online, including our advocacy training program and group workshops. We have also introduced new and interactive Brady Club activities and even produced an e-book version in English and Spanish of our children’s book, Nico’s Lunchbox.

HAE Research – Understanding HAE community challenges in times of COVID-19: As part of our response to understand the impact COVID-19 has had on our community, the US HAEA has prepared and shared two separate important surveys with patients to help us understand and identify: 1) access to therapies, and 2) the interaction between COVID-19 and HAE. The survey results will provide valuable insight to allow us to better respond to our community’s needs.

With respect to the first survey, the HAEA will use this information to 1) identify patterns in insurance denials, and 2) develop strategies and education materials that the community and prescribing physicians can use to overcome insurance coverage obstacles. The second survey focuses more specifically on COVID-19 and seeks to examine whether people with HAE are more vulnerable to the virus. It also evaluates if HAE or HAE therapies affect the duration and/or severity of a COVID-19 infection. The data gathered for the study will provide valuable insights that could guide treatment decisions for anyone with HAE who may contract COVID-19.

HAE Speaks Podcast – Showcasing HAE Life Experiences: In our continued outreach to the community, we heard many requests for more opportunities to share the HAE journey. In response to our members’ input, we recently launched a new podcast series: HAE Speaks. The podcast series seeks to tell the stories and life experiences of individuals affected by HAE using a popular platform that enables us to reach a wider audience. HAE Speaks focuses on relevant topics, explained simply through friendly and open conversations. It is our hope that the HAE Speaks podcast becomes a regular addition to our community’s playlists and that we are able to convey meaningful stories and information that enrich daily lives. Find the HAE Speaks podcast on iTunes or Spotify, or access via Anchor.

  • Episode 1: Life as a Caregiver
  • Episode 2: Tips for navigating life through the COVID-19 pandemic
  • Episode 3: Ongoing Research for New HAE treatments (Tony Castaldo, HAEA CEO)
  • Episode 4: Life before and after an HAE diagnosis of a child

US HAEA Webinar Briefs provide useful and timely information: The US HAEA developed a series of educational webinar briefs, hosted by our CEO Tony Castaldo, that presents information on issues that are important to our HAEA community. All webinar briefs provide timely and concise information to the HAE community, and all are offered by professionals who understand HAE. They are easily accessible through the US HAEA webpage and social media outlets. The webinar briefs cover a wide array of topics and are a great way to stay updated with the latest developments affecting the HAE community, including COVID-19.  Following is a list of all webinars available to date:

HAEA Webinar Brief: COVID-19 and HAE, with Dr. Marc Riedl, Clinical Director at the US HAEA Angioedema Center at University of California San Diego

  • HAEA Webinar Brief: COVID-19 and Insurance, with HAEA Health Advocate, Troyce Venturella, MPH, RN, CCM
  • HAEA Webinar Brief: COVID-19 recovered HAE Patient Scott McCoy
  • HAEA Webinar Brief: HAEA Scholarships Support Education for our Youth, with HAEA Patient Advocate, Lisa Facciolla
  • HAEA Webinar Brief: Why People with HAE Should Not Fear the Dentist, with Dr. Jonathan Bernstein

All webinar briefs are available through the US HAEA YouTube Channel (ushaea).