From Ianice Viel, HAE Advocate & Digital & Social Media Manager:

hae day :-) 2022 Awareness Campaign: The achievements of the HAE community in recent years are something to be celebrated on a national scale! Ten years ago, the HAEA recognized the need for legislative action to promote national awareness aimed at ultimately improving the lives of people affected by an ultra-rare condition called Hereditary Angioedema (HAE). 

The idea was to seek a legislative initiative to establish an enduring platform for a nationwide HAE awareness and education campaign. During our travels throughout the halls of Congress, we found a champion in the senior Senator from Hawaii, Daniel K. Inouye. He enthusiastically introduced Senate Resolution 286, which affirmed 16 May as HAE Day, and received a unanimous endorsement by the United States Senate.  

On 16 May 2012 and every year since, the HAEA community including people with HAE, caregivers, families, healthcare practitioners, scientists, and the pharmaceutical industry commemorates HAE Day by organizing events that promote HAE awareness and educational activities. 

The approval of Senate Resolution 286 also led to developing a variety of HAEA events that include HAE IN-MOTION®, Meet & Greet, Youth Advocacy Programs, giving campaigns, and our annual Capitol Hill Day, among many others. We are also proud to report that HAE Day is now celebrated by thousands of people around the globe, from the edge of Patagonia in Argentina to the islands of Japan. 

HAE Day also challenged us to advocate for better therapies and an improved quality of life. Today, we enjoy an unprecedented number of effective therapies, with eight FDA-approved products and thirteen more in development. We count on the momentum and the galvanizing force of HAE Day to continue motivating the quest for new and better HAE treatments. 

The US HAEA is proud to announce the launch of our annual hae day :-) Awareness Campaign. This year’s storytelling campaign invites members of the HAE community to share their personal HAE stories to raise awareness for HAE! To assist community members in developing memorable and powerful stories, the US HAEA is providing those who participate with a storytelling toolkit along with unique resources that will guide them through the storytelling process, whether it be a written or video testimonial. 

Our goal for this campaign is to flood our social media platforms with community stories and amplify our rare voices to raise awareness for HAE. This campaign allows us to reflect back on the group of committed and passionate advocates who came together to make this historic anniversary possible, as well as the great strides we have made as an HAE community!

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 (QoL). The aim of the study is to develop and validate a broad-based HAE QoL instrument that more accurately depicts disease burden. This research will help us publish a QoL 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 QoL that result from modern HAE medicines. Based on concepts derived from behavioral economics, this tool will be more sensitive than any that are currently being utilized. We believe that this cutting edge project could revolutionize QoL measurement of HAE and other chronic conditions. 

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. This tool works to ensure 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. We believe that past estimates underestimate the true prevalence of 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. 

Clinical Trials: The US HAEA assists in clinical trial recruitment for individuals with HAE Type I, Type II, or HAE with Normal C1-Inhibitor and is currently assisting with recruitment efforts for an unprecedented seven HAE clinical trials. Clinical trial participation is crucial in medication development, as well as a critical part of expanding our knowledge of this rare disease. 

Using our broad and curated database, we are able to identify and target community members based on location and screening criteria.  We reach out via email and phone to provide general information and participation requirements for each study and connect interested and pre-screened individuals with the site coordinator at the trial location to answer any additional questions or to begin the registration and screening process.

The HAEA has a proven and successful track record in clinical trial recruitment and continues to recruit for open trials whenever possible.  To view a list of active clinical trials please visit https://www.haea.org/pages/p/clinical_trials. 

HAEA Round Table: Because HAE is so rare, it can feel isolating to deal with the everyday challenges of learning how to manage living with this rare chronic illness. However, when we come together as a community to talk about our struggles, it is easier to see that we are not alone in our efforts to live a normal life with HAE. 

We also realize that at different life stages, HAE can affect individuals in various ways. That is why we have developed the HAE Round Table as a platform for members of our community to connect with their peers about the issues that currently affect them. 

Through the HAEA Round Table we will discuss questions such as: 

  • How do you explain your HAE diagnosis when dating? 
  • Is your HAE affected by drinking alcohol?
  • How do you overcome a fear of needles?
  • How did you go about obtaining insurance with your HAE diagnosis? 

The HAEA Round Table will premiere every other month on the US HAEA official Facebook page Live. Save the calendar of events below to make sure you tune in for every event that is relevant to you and your loved ones with HAE:

  • 12 April: For Youth with HAE Ages 12-15 – Anxiety, Stress, and Growth with HAE
  • 14 June: For Youth with HAE Ages 16-20 – How Do You Talk to Others About Your HAE? 
  • 9 August: For Young Adults with HAE – Growing Into Adulthood with HAE
  • 11 October: For Baby Boomers with HAE – How Does HAE Affect Aging? 
  • 1 November: For Caregivers and Parents – What is the Best Way to Support Someone with HAE?  

US HAEA Podcasts: The US HAEA is continuing to present community stories on both of our podcast platforms. These podcasts include:

HAE Speaks Podcast features adults with HAE or their caregivers who speak about various topics that affect the everyday lives of our community members. These topics include learning to come to terms with your diagnosis, mastering travel with HAE, how HAE can affect pregnancy, and gaining a sense of purpose through advocating for HAE. There are twenty-two informative episodes of the HAE Speaks podcast. 

#BeyondHAE Podcast presents stories from the youngest members of our community. Young people with HAE can face a series of unique challenges when it comes to their diagnosis, so the HAEA has created the #BeyondHAE podcast to unite the youth community through shared experiences. Featured topics include understanding anxiety and how it relates to HAE, facing fear of needles, speaking to significant others or classmates about HAE, and creating a strong support system. There are thirty-six illuminating episodes of the #BeyondHAE podcast. 

These podcasts are available on Spotify and Apple Podcasts!