HAE International asks supporters to ‘step’ up for HAE Awareness Day

Activity challenge, which began last month, will run through May

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by Mary Chapman |

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A red balloon rises in a huddle of black and white balloons, signifying rare disease awareness.

Hereditary Angioedema (HAE) Awareness Day is observed every May 16 to call attention to a disorder that affects an estimated 1 in 50,000 to 150,000 people globally.

Called “hae day :),” the observance targets targets policymakers, industry representatives, public authorities, researchers, and healthcare professionals, along with the general public.

Leading the effort is HAE International (HAEi), an international network of patient groups that seeks to improve the lives of those with HAE, a condition marked by sudden swelling attacks in the skin’s deeper layers, which in some cases can be life-threatening. The group has member organizations in 99 countries.

“By increasing awareness of HAE, we can create an environment for earlier and more accurate diagnosis and improve care for people with HAE. Ultimately, securing a better quality of life for everyone with HAE,” HAEi states on an Awareness Day webpage.

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Stepping into HAE awareness

To help boost awareness “step by step,” the organization is reprising its activity challenge, which began in early April and runs through May. This year’s theme is again #Active4HAE.

The challenge calls for supporters to sign up with a team and walk or engage in any activity that can improve their well-being, log the time spent, earn badges, and share photos on social media. All recorded activity times will be converted into steps and past participants will be able to check their previous results.

“In the past, we have generated millions of steps, enough to walk around Earth’s circumference several times,” the organization notes.

So far, activity challenge participants in 43 countries have completed more than 64 million steps and 7,700 activities, enough for 1.2 trips around the world. Last year, 174,733,777 steps were taken, corresponding to 3.3 trips around the world.

HAEi is offering an online gallery of this year’s challenge images, to which participants may contribute. Activities thus far include cycling, walking, reading, CrossFit training, running, hiking, yoga, strolling, gardening, and aerobic dance, Pilates, and painting.

To help supporters mark the day, the organization is providing a toolbox that includes a downloadable logo, advice, and awareness day templates.

In other campaign efforts, HAE Peru has a number of events planned throughout the month, including a meeting of patients and families on May 26.

HAE Korea will host an hae day 🙂 event on May 11 in Seoul, South Korea at the Lotte World Tower and Seokchon Lake Park. On the same day, HAE Serbia is organizing a hike to the Avala Mountain to raise awareness. And HAEi Ireland will host a patient support group meetup on May 12 at Emo Court in Portlaoise.

For its part, HAE Spain is inviting supporters to participate in the activity challenge by submitting a photo of their favorite place as part of a video and collage to be shared on social media and its website.

Elsewhere, the CN Tower in Toronto will be illuminated in purple, the color that represents the disease. On May 16, HAE Mexico will host the symposium “National Day of Hereditary Angioedema — An Anthropological View.”  And in Italy, the Italian Network for Hereditary and Acquired Angioedema is collaborating with the AAEE to present the third national Angioedema Day, set for May 18. Lastly, SEE HAE, a meeting about providing better care for families, will be held May 31 to June 2 in Skopje, North Macedonia.

Other awareness day suggestions include posting activities on social media, sharing patient stories, seeking media coverage for events, organizing events, and informing healthcare professionals and other rare disease organizations about the campaign.