From Digital & Social Media Manager Ianice Viel, US HAEA
2021 has continued to be an incredibly productive year for the US HAEA despite the ongoing pandemic-related challenges. As shown in the examples that follow, our programs, services, and activities continued to generate great enthusiasm and participation.
2021 US HAEA Virtual Summit Series: The 2021 “first ever” US HAEA Virtual Summit series was a resounding success that was enjoyed by over 1,200 participants. The event brought together people with HAE, expert physicians, caregivers, industry partners, health insurance representatives, and the FDA. This “one-of-a-kind virtual” summit series addressed the issues faced by our community and offered ideas on how we can work together to solve them.
2021 Capitol Hill Campaign: The outstanding level of participation in our Virtual 2021 US HAEA Capitol Hill Campaign demonstrates that our community continues to be eager to advocate for people with HAE. The program kicked off with a live event that featured US elected officials and HAEA Advocates who showed support for the HAE community and efforts to improve quality of life. We then held an educational session on best practices for presenting personal HAE stories to elected representatives. Armed with this knowledge, attendees participated in exclusive virtual meetings with the elected officials who represent them in Congress. During these meetings, our HAEA Advocates shared their stories and asked their representatives to vote on issues that directly impact the day-to-day challenges presented to people with HAE. The 2021 HAEA Capitol Hill Campaign is a perfect example of how virtual advocacy can make a difference in the lives of people affected by HAE.
2021 HAE IN-MOTION® Virtual Challenge: The 2021 HAE IN-MOTION® Virtual Challenge was a huge success with over 500 people joining together to raise HAE awareness. By registering over 35,000 miles in various activities, the HAEA community once again came together to take action for HAE. The event also raised funds to support key HAEA programs including the Pam King HAEA Scholarship Program, the Chris Whalen HAEA Compassion Fund, and the HAEA Research Fund.
Virtual Meet and Greets Events: In 2021 the HAEA hosted a series of virtual Meet & Greet events for US HAEA youth and young adults that offered an opportunity to connect with peers while learning about the HAEA’s different programs and services, specially tailored for the HAE community.
We also held a large number of virtual Meet & Greet events for adults with HAE. Due to the accessible nature of these Zoom Meet and Greet Events, we reached more members of the HAE community and hosted meetings across more areas of the US than ever before.
US HAEA Podcasts: The US HAEA is proud to host two podcasts for our community: #BeyondHAE and HAE Speaks. The HAE Speaks podcast series presents unique stories of individuals affected by HAE with the goal of connecting our community through shared experiences. The #BeyondHAE Youth Podcast series is produced by and for young people with HAE. The HAE Speaks and #BeyondHAE podcasts are available on all major podcasting platforms.
HAEA.org has been redesigned: The US HAEA community spoke, and we listened. Responses to recent surveys and focus groups helped us reimagine the haea.org website and transform it into an intuitive, dynamic, and mobile-friendly resource. At haea.org, you can find valuable resources such as: educational materials, including everything you need to know about successfully managing HAE; access to our kind and compassionate HAE Advocates; ways to connect to the broader HAEA community; and information about the US HAEA’s programs, services, and activities. The new website features enhanced sections tailored to particular groups within our HAE community, such as parents of children with HAE and newly diagnosed individuals. Other important upgrades include easier ways to search for and find information on: FDA-approved treatments, ongoing clinical trials, breaking HAE news, everything you need to know about hosting or participating in a US HAEA event, and much more.
HAEA Children’s Book Series: “Nico’s Story”: All three books in the HAEA Children’s book series are now available as e-books for the international community. In the recently released book “Nico’s Story”, Nico cannot wait to get on the plane and head to Washington, DC. He and his family will join other HAE advocates for Capitol Hill Day. Nico is excited to visit Congress and talk about what it’s like to have HAE. Best of all, he will get to see his good friends, Jay and Kai. He has not seen them since the surprise visit at the lake house last summer. Will Nico make new friends at Capitol Hill Day? What will he discover when he explores the nation’s capital? Listen to the e-books of the HAEA Children’s book series in English and Spanish on our Vimeo channel (ushaea).
Advances in HAE Research: 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. Our ongoing projects include:
An HAE-Specific Instrument to Measure Quality of Life: The US HAEA is wrapping up a unique, ground-breaking research study that seeks to accurately show how HAE affects overall quality of life. This research will help us publish a quality of life questionnaire that (1) truly captures the way HAE affects the everyday life of individuals and families, and (2) demonstrates to health insurers and others the value of life-changing improvements in health and quality of life that result from modern HAE medicines.
Shared Decision-Making Tool: 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.
HAE and Aging Study: The US HAEA study on HAE and Aging will help us to better understand the demographic and clinical characteristics, HAE treatment patterns, HAE impact and burden, and perceived health-related quality of life 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 and Aging does not exist.
HAEA Study on the Number of People with HAE in the US: The US HAEA is dedicated to offering its unique programs, services, and activities to everyone in the US that has HAE. Estimates regarding the number of people with the condition in the United States have an extremely large range, which means we have no idea if we are reaching the entire population. We have initiated a study using sophisticated data mining techniques and expert HAE physician input to calculate the number of people with HAE in the United States. The results of this study will help the US HAEA to target its outreach efforts to continue building the HAEA community.