Supporters ‘Take Next Step’ Toward HAE Awareness Day on May 16

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by Mary Chapman |

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HAE Awareness Day

This year, May 16 marks the 10th anniversary of HAE Awareness Day, set aside annually to call global attention to hereditary angioedema (HAE), a chronic disorder characterized by sudden swelling attacks in the skin’s deeper layers.

To recognize the work the HAE community has done so far, and to move efforts forward, organizers have opened a special campaign around this year’s Awareness Day theme: Let’s Take the Next Step.

The aim is to help make HAE better known among the general public, healthcare professionals, healthcare decision-makers, and industry representatives. The organization HAE International (HAEi), a global non-profit network of patient associations, is coordinating the annual event.

For 2021, the organization is taking time to acknowledge what stakeholders have accomplished to date, in addition to underscoring continued community needs.

“We’re looking back at HAE community achievements over the past 10 years and shining a light on what we want to achieve through the power of advocacy in the future,” Nevena Tsutsumanova, HAEi operations manager, said on an Awareness Day webpage.

“There has been lots of positive progress, but there is still a long way to go before reaching our goals of improved time to diagnosis and consistent access to lifesaving therapies for everyone with HAE around the world,” Tsutsumanova said.

The Take the Next Step campaign, which began April 1, challenges supporters to help raise awareness “step by step” in time to virtually make it around the world by May 16. Campaign participants are asked to use this webpage to regularly record time spent on physical or wellbeing activities.

In addition to walking, activities can include running, cycling, working out, meditating, reading, or even puttering around the garden. For their activities, participants can earn limited-edition regional badges — one for each of the eight regions in the organization’s global patient network.

The organization will convert those activities into steps. So far, at least 2,800 activities have taken place in 43 countries for a total of more than 36 million steps. Supporters can go here for a regularly updated image gallery of activities.

“We are taking a walk around the world, and we are doing this via participation in lots of different activities both physical and wellbeing focused, not only walking,” said Deborah Corcoran, HAEi’s chief specialist for projects and research.

“People with HAE know that stress is a trigger for attacks, which is why staying healthy both mentally and physically can help managing HAE,” she said.

Throughout the campaign, HAEi will spotlight its history, achievements, and hopes for the future. As the global “walk” hits each region, the organization will post information about that area and its member organizations. Supporters will learn of success stories, achievements, proudest community moments, hopes for the future, and fun facts about the particular region or country. Some testimonials also will come from regional patient advocates.

Supporters are asked to share photos of their activities on their own social media platforms, using the hashtags #active4hae and #haeday10. The organization is also offering a toolbox with resources, including advice and templates for social media and community and media outreach.