From foot races to lit landmarks, HAE Day on May 16 aims to raise awareness
Patient organizations globally are uniting to educate others
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On May 16, organizations and supporters worldwide will mark hae day : -) — designed to raise awareness of hereditary angioedema (HAE) — through a range of activities, from a foot race around the bridges of Osijek, Croatia, to the illumination of landmarks throughout Canada.
The annual event aims to raise the profile of the rare disease among the healthcare community and the public. The chronic genetic disorder is estimated to have a prevalence of between 1 in 50,000 to 1 in 150,000 people globally.
The initiative is led by HAE International (HAEi), an advocacy group that works with more than 100 member groups worldwide to increase recognition of HAE and improve the lives of those affected by the condition.
HAE is a form of angioedema characterized by recurrent episodes of swelling in the skin’s deeper layers or in the mucus membranes. Because the disease is rare, doctors often mistakenly associate the swelling with common conditions such as allergies.
Unlike acute allergic angioedema, however, HAE does not result from an allergic reaction. It’s caused by an overproduction of bradykinin, a signaling molecule that regulates blood pressure and inflammation. By contrast, swelling in allergies is driven by histamine, a chemical messenger released by the immune system during an allergic reaction.
While hereditary angioedema attacks can occur without a clear trigger, allergic swelling typically follows exposure to allergens such as foods, medicines, or insect stings.
Because HAE can mimic conditions related to allergies, an accurate diagnosis can be missed or delayed, resulting in delayed treatment, a reduced quality of life, loss of productivity and income, and poorer outcomes. More awareness is expected to help shorten diagnostic delays, improve access to care and treatment, and contribute to a better quality of life for patients.
HAE Day amplifies patient voices
HAE Day uses lived experience as an awareness tool, providing a global platform for those with hereditary angioedema to share their experiences, reduce isolation, and advocate for better care and faster diagnoses.
By uniting patient organizations globally, the event creates a collective voice that can make it easier to raise awareness and educate the public than at other times of the year.
Organizers are encouraging those affected by HAE to share their stories through social media, video testimonials, and blogs, using vehicles like the storytelling toolkit offered by the US Hereditary Angioedema Association (HAEA).
In an HAEA community blog, a contributor named Janet wrote that “hae day : -) means that awareness of a very rare disease is better understood by emergency room doctors, and all doctors in general, which helps patients get better care.”
Nathan, another contributor, shared this: “To me, hae day : -) is a great day to bring the community together.”
“Having such a rare disorder can feel super isolating at times, so having a day where the whole community comes together can feel really good. It is nice to have a group of people who can really understand what you’re going through,” Nathan said “It is also a great day to advocate to my friends who don’t have HAE about what HAE is and how it affects me.”
Patient voices are also amplified through the HAEI #Active4HAE Challenge, which encourages participants to engage in activities to raise awareness and create a global show of solidarity.
Impact of awareness on HAE diagnosis and care
Increased HAE awareness can lead to earlier diagnoses, particularly in emerging regions, reduce time-to-treatment, improve patients’ quality of life, and result in better outcomes. Currently, the average time to diagnosis is eight years.
For example, heightened awareness can help emergency department doctors distinguish HAE from allergic reactions — crucial for proper, prompt, and potentially life-saving treatment.
“By increasing awareness of HAE, we can create an environment for earlier and more accurate diagnosis and improve care for people with HAE,” the HAEI states on a webpage about HAE Day. “Ultimately, securing a better quality of life for everyone with HAE.”
More awareness and understanding of HAE also promotes family testing, which is vital as HAE is genetic and frequently affects multiple members of a single family. It can also lead to improved therapies.
“We count on the momentum and the galvanizing force of hae day : -) to continue motivating the quest for new and better HAE treatments,” states an HAEA webpage.
