10 year anniversary of global HAE awareness day

16 May 2021 marks the 10th anniversary of the hae day :-) awareness day. For the last ten years, HAEi and its member organizations worldwide have used 16 May as a focus for raising awareness: not just on the day itself but in the weeks leading up to it. 

Let’s Take the Next Step

“We want to celebrate this anniversary with a special campaign to recognize the work of our HAE Community over the last ten years. The theme of our 10th anniversary campaign is ‘Let’s Take the Next Step’. 

We’re looking back at HAE community achievements over the past ten years and shining a light on what we want to achieve through the power of advocacy in the future. 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. Our work is far from over!”, says HAEi Operations Manager Nevena Tsutsumanova. 

The campaign launches on 1 April with the activity challenge of stepping around the world in time for hae day :-) on 16 May 2021. 

Take part in physical and wellbeing activities

“We are asking HAE friends all over the globe to take part in physical or wellbeing activities and regularly record the time you spend on each activity, on our campaign website at haeday.org. Any and all activity reported here will be converted into steps. Our goal is to generate enough steps for a virtual walk that will take us to all the HAEi regions, where our member organizations will showcase their history, achievements and hopes for the future”, HAEi Chief Specialist Projects and Research Deborah Corcoran explains:

“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. People with HAE know that stress is a trigger for attacks, which is why staying healthy both mentally and physically can help managing HAE. We’re also very aware that we continue to live with restrictions to help manage the COVID-19 pandemic, so we are encouraging participation in activities that can be done both outside and inside.”

Whether you are able to be out walking, running or cycling, or you have recently started following online workout classes, or you are reading, meditating or just find yourself pottering around the garden a bit more, you can enter the time for this activity.

Regularly adding activities is important

“Adding your activities to haeday.org regularly is really important as this is what will help us visit our regions and member organizations. When we get to each region, everyone will be able to read more about the HAEi member organizations in that region. For example, what are their success stories, achievements, proudest moments as a community and what are their hopes for the future of HAE – as well as some fun information about their country. This will be in both English and local language. You’ll also get to hear from our Regional Patient Advocates and, hopefully, HAEi if we make it around the world in time for hae day :-) 2021”, Deborah Corcoran explains.

Updated campaign website

The updated haeday.org website has lots of helpful information about the campaign, inspiration for activities and how you can get involved. As you add your activities to the website, you can share pictures of what you are doing on hae day : -) 2021. If you also share these via your social media channels, using the hashtags #active4hae and #haeday10 others will be able to find you.

“To make activity entering easier, we have introduced the option to create a profile on haeday.org. If you create a profile, you have the chance to earn our limited-edition regional badges, one for each region where you enter an activity. Your profile will show a clear overview of all your activities entered and badges earned. For those of you who don’t want to create a profile but still want to enter activities and take part in the challenge, don’t worry, you can still do that on haeday.org”, says Nevena Tsutsumanova.

2021-04-05T20:25:13+02:00April 5, 2021|HAEi News|