Advocates to Mark HAE Awareness Day on May 16 by ‘Stepping Up’

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by Mary Chapman |

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HAE Awareness Day is observed around the world each May 16 to bring attention to hereditary angioedema (HAE) and those people the disorder affects.

The goal is to heighten awareness among the general public, as well as healthcare professionals, decision-makers, and industry representatives. The theme for this year’s observance is “Stepping Up for the Global HAE Movement.”

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

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The global effort is being led by HAE International (HAEi), an international network of patient organizations that seeks to improve the lives of those living with HAE, which is marked by sudden swelling attacks in the deeper layers of the skin. Currently, HAEi supports 93 member organizations globally.

The umbrella organization is featuring its activity challenge that began early last month and will run to May 31.

Last year, supporters produced 168 million steps, enough to walk around the earth’s circumference about three times, according to HAEi. The goal for this year is to surpass that number.

Supporters may participate in all types of activities, from walking and running to gardening, cycling, crossfit training, or even reading a book. Participants may also share photos of activities, earn badges, and even join or create a team. All logged activity times will be converted into steps. So far, 34,258,189 “steps” have been taken involving 2,404 participants in 35 countries.

“We look forward to seeing the different ways our community will be Stepping Up for the global HAE movement in 2022,” Anthony J. Castaldo, HAEi president and CEO, said in a statement. “It’s amazing what we can achieve when we step up together.”

For its part, the U.S. Hereditary Angioedema Association (HAEA) is encouraging supporters to participate in Awareness Day by sharing their story in either written or video format to help raise $5,000 toward research and HAEA initiatives. Participants may order a free storytelling toolkit that includes story templates, recording tools, and instructions.

Elsewhere, HAE Russia is inviting physicians, patients, and the public to attend a May 13 roundtable meeting with the Russian Institute of Immunology, either in person or remotely.

Also, HAE Germany will present a virtual Patient Day on May 14 for an exchange of journey experiences.