From Director of Engagement & Communications Ianice Viel, US HAEA
We are dedicated to providing our 8,000 members with programs, services, and activities that engage and unite the community in a common goal focused on improving quality of life for people with HAE.
HAEA Round Tables: Because HAE is so rare, people can feel isolated when dealing with the everyday challenges of learning how to live with this chronic illness. When we come together as a community and talk about our struggles, however, we realize that we are not alone in our efforts to live a normal life.
That is why US HAEA has developed the HAEA Round Table. This platform connects members of our community with their peers on the issues that currently affect them, including:
- HAE and Relationships
- Aging and HAE
- Caregivers for HAE
The HAEA Round Table will be posted every other month on our official Facebook page Live. Round Table recordings can be accessed at https://vimeo.com/user/115781635/folder/8930101.
HAEA Community Blog: The HAEA Community Blog is a platform that allows people with HAE to share their unique stories on a wide variety of topics ranging from emotional health to treatment.
Featured Blog Articles:
“Running was something that I always loved to do, so I was very grateful to be able to use something that I loved to work towards making a difference.”
“Despite my HAE attacks increasing in frequency during pregnancy, I was determined to be proactive in my care and treatment to ensure that my HAE was well managed.”
>> Read A First Time Mom’s Experience Managing Her HAE While Pregnant: Lisa’s Story
Advances in Research:
Updates in HAE Care from the US HAEA: We are pleased to announce a new, free CME Program for Medical Professionals “Updates in Hereditary Angioedema Care from the HAEA”. This continuing education activity brings together several expert HAE physicians who will provide highlights from the US HAEA Medical Advisory Board 2020 Guidelines for the Management of HAE, as well as discuss emerging prophylactic and therapeutic agents, and practical approaches to patient-centered care. The CME Program is available at www.haea.org.
HAEA Study on the Number of People with HAE in the United States: The prevalence of HAE has been estimated to be anywhere between 1 in 10,000 to 1 in 100,000. In 2022, we began pilot testing an approach that could potentially provide a more accurate estimate. Our methodology has two basic steps. First, we analyzed insurance claims to identify subjects who had HAE-related tests performed and medicines prescribed. Second, a panel of expert physicians reviewed the group identified in the first step and reached a consensus on whether or not the data pattern observed pointed to HAE as the diagnosis. The initial results from the pilot test will be available in the Summer of 2023.
An HAE-Specific Instrument to Measure Quality of Life: The US HAEA is working on a unique, ground-breaking research study that seeks to illustrate how HAE affects overall quality of life (QoL). Ultimately, the objective is to develop and validate a broad-based HAE QoL instrument that accurately depicts the burden of living with the disease. This research will help us publish a QoL questionnaire that truly captures the way HAE affects the everyday life of people with HAE. The QoL instrument has been validated through surveys that included 410 participants. A manuscript is being prepared for publication.
Shared Decision-Making Tool: We have designed and field-tested a Shared Decision-Making tool that can now be accessed at www.haea.org. The tool has been designed to provide an overview of your HAE before meeting with your physician to discuss a treatment plan. The HAE Shared Decision-Making Tool will provide an overview of your HAE journey to date and form the basis for collaboration between you and your treating physician. The questions in the tool are designed to better understand your current experience with HAE while capturing your goals for the future. Your answers will empower a joint decision-making process to enable the creation of your personalized treatment plan.
