Showcasing the work of the 93 member countries and
learning a lot of fun and interesting things along the way

341 photos in the gallery to share activities – 
– visit before 1 November 2021 to see them all!

Input from the Regional Patient Advocates supporting the regions;
both in writing and in lighter hearted video interviews 

News from the HAEi Youngsters about how
their group and activities have changed

Overview of HAEi activites over the past 10 years 

As the HAE community knows, 16 May is the annual focus for raising awareness of HAE. In 2021, HAEi reached the milestone of the 10th hae day :-) and decided to celebrate with a very special campaign and an update to the activity challenge.

The HAEi team began 2021 with an extensive project plan and worked for months to bring everything together to ensure that this milestone was an exciting and unique opportunity for the HAE community. With the great efforts from and wonderful collaboration with the Regional Patient Advocates, member organizations, HAEi Youngsters and HAEi Leadership, the “Let’s Take the Next Step” campaign launched on 1 April 2021. 

“To mark the 10th hae day :-) we planned something special. First, a campaign to showcase the power of advocacy and the impact member organizations and HAEi have had over the past ten years. Secondly, an activity challenge that everyone could take part in as they continued to live with restrictions to help manage the COVID-19 pandemic,” says Henrik Balle Boysen, HAEi Executive Vice President and COO.

The participants regularly added activities – both physical and wellbeing – to the hae day :-) website. The steps generated by the activities created a virtual walk around the world, unlocking content from the different regions and member countries – all in time for hae day :-) 2021.

Henrik Balle Boysen continues: “We’ve been overwhelmed by the response. Seeing the on-the-ground difference that our member organizations make and how our tools and resources are helping is so rewarding, as is seeing the amazing numbers from this year.”

The “Let’s Take the Next Step” campaign ran until 31 May 2021. In that time, it had generated a record-breaking 168,787,911 steps from 7,414 activities in 61 countries – that is 128,649 km in total. Take a bow everyone – what a result.

steps taken in total

“People participated on their own or in groups, as an HAE organization or as a company and walked, cycled, ran, rowed, read, painted, meditated, danced, “bingo-ed” and much more. HAEi says a huge thank you to each and every person who took part”, says Henrik Balle Boysen.

The generated steps took the participants on a virtual walk visiting each of the eight HAEi regions to showcase the 93 member countries’ achievements and spotlight the HAEi Youngsters and HAEi developments at the end. You can catch up with all this and more at 

“For hae day :-) 2021, we’ve been able to shine a light on incredible achievements that are a result of the power of advocacy. But we know our work is far from complete. We continue in our day-to-day efforts to achieve the goals of improved time to diagnosis and consistent access to lifesaving therapies for everyone with HAE around the world”, says Anthony J. Castaldo, HAEi President and CEO.

Anthony J. Castaldo adds: “There is no doubt that the annual hae day :-) offers a great opportunity as a focus for HAE awareness, and we see more and more engagement across our community each year. Although we won’t have an anniversary to spur us on next year, we look forward to opening our activity challenge again on 1 April 2022. Let’s see where we can get to then.”

Image gallery from the activity challenge