Supporters of HAE Awareness Day are invited to ‘step up’ on May 16

The theme for this year's events is #Active4HAE

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by Andrea Lobo |

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Hereditary angioedema (HAE) Awareness Day is an annual global event held each May 16 to call attention to the disease, which is estimated to affect 1 in 50,000 to 150,000 people worldwide.

The day focuses on activities that unite the HAE community and raise awareness among the general public, healthcare professionals, decision-makers, and industry representatives.

The theme for this year is #Active4HAE. From early April to the end of May, supporters are encouraged to participate in any form of activity that can improve their well-being, record the time spent, share photos, earn badges, and join a team. All logged activity times will be converted into steps and profiles created in 2022 and before will be made available so participants can check previous years to see if they can beat their total.

Last year, participants took nearly 150 million steps, totaling 2.8 trips around the world. This year, more than 67 million steps, stemming from 4,495 activities in 35 countries, have been logged — enough for 1.3 trips around the world.

“This day is important as we can create an environment for earlier and more accurate diagnosis and improve care for people with HAE,” according to an Awareness Day webpage from HAE International (HAEi), a global nonprofit network of patient associations that aims to help those with HAE. The organization includes national patient groups or formal HAE member organizations in 96 countries.

A feature of HAE is swelling attacks in the deeper layers of the skin, which can be life-threatening in some cases. The condition is caused by genetic mutations that can be passed from parents to children, with a child having at least a 50% chance of inheriting it if one of the parents has it.

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HAE Day all around the world

As part of HAEi’s theme this year, member HAE organizations around the world will host walking and activity events of their own to raise awareness.

For example, HAE South Africa is encouraging patients, caregivers, and healthcare providers to add their activities to HAEi’s activity challenge. The association is also sharing patients’ stories on its Facebook page and introducing their medical and industry partners who contribute to diagnosing and treating HAE patients.

HAE Spain is organizing the Camino Walk 2023, wherein participants will travel the Camino de Santiago Walk, a network of pilgrimage routes to Santiago de Compostela, between May 13-17. Each day, participants will walk an average of 15 kilometers (about 9.3 miles) to make a statement that people with HAE can overcome obstacles and live normal and fulfilling lives.

A similar event will be hosted by HAE Macedonia, which will observe the day with a hiking tour May 14 that will take HAE patients and their caregivers to the Lesnovo monastery from the 14th century.

HAE Canada is inviting everyone to participate in the activity challenge via a walk on May 16. It will take place in Ottawa and feature Anthony Castaldo, president of HAEi, and HAEi member Henrik Balle Boysen.

Other events include meetings where participants will be able to share their experiences and receive the latest updates on the condition.

HAE Germany will present a virtual Patient Day May 13 for an exchange of journey experiences, while HAE Portugal will join a May 16 meeting with patients and families to talk about the unrealized needs of patients.

Finally, HAE Brazil was invited for a public hearing on May 16 in Brasilia to raise awareness among politicians about a HAE diagnosis, treatment access, and creating a national HAE awareness day.