Aiming to raise awareness of rare angioedema type on ‘hae day’
Goal of HAE Awareness Day May 16 is better care, earlier diagnosis
To mark Hereditary Angioedema (HAE) Awareness Day this year, the advocacy group HAE International is smiling: The theme for the events of Friday, May 16, is “hae day,” with punctuation marks creating a smiley face.
An annual worldwide event, HAE Awareness Day aims to familiarize people with the rare angioedema type, which is marked by recurrent swelling attacks. The genetic condition is estimated to affect 1 in 50,000 to 150,000 people globally.
HAE International, a global network of member organizations, has created a toolbox of resources to help those within the community spread the word about the day — whether by posting on social media, contacting traditional media organizations, or getting in touch with members of their own communities.
“Our goal is to create an environment in which there is better care, earlier and more accurate diagnosis, and knowledge that HAE patients can lead healthy lives,” the organization states on an event webpage.
Advocates smiling this HAE Awareness Day
As in previous years, HAE International will host an activity challenge in recognition of hae day. The challenge, which runs through the end of May, encourages people in the HAE community to engage in all types of activities — including physical pursuits, as well as other undertakings that aim to improve overall well-being.
Participants can create their own agenda or turn to the toolbox for ideas.
“We recognize that each country will have different resources and levels of need, and therefore we have designed the elements of the toolbox so you can pick and choose the ones appropriate for you to use,” the organization states on its website.
Join us, be #active4HAE in purple (new for 2025) and help us travel 3.5 times around the world and beat last year’s total!
On the hae day website, members of the community can create a profile where they can log their activities, share photos, earn badges, join a team, and set and track their own goals. All activities recorded will be converted into steps. The goal is to amass enough steps to go around the world 3.5 times. To date, more than 130 million steps have been recorded, which is enough to span the world nearly 2.5 times.
“Join us, be #active4HAE in purple (new for 2025) and help us travel 3.5 times around the world and beat last year’s total!” the webpage states.
Participants in the challenge can also share their progress on social media with the hashtag #active4HAE. New this year, challenge participants are being encouraged to get active while using the color purple, which has been adopted by many HAE member organizations as their color of advocacy.
“You can wear purple clothing or accessories, use purple equipment, spot purple in your activity environment, or get creative with anything purple during your activity!” the website states.
In addition, other events for hae day will be going on around the world. These include the presentation of a new children’s book titled “The Rare Boy and the Talkative Little Balloon,” in Spanish, on May 15. On May 16, the Swords Castle in Ireland will be lit in purple to mark hae day. The following day, on May 17, the fourth edition of Angioedema Day will be held in Italy. A benefit concert is slated for May 25 in Spain.
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