By Chief Specialist Projects and Research Deborah Corcoran
Throughout April and May 2022, our community came together to raise awareness of HAE with hae day :-) 16 May as the focus.
The outstanding HAE events and activities organized around the world included
- virtual patient days,
- educational events for doctors,
- dance and children’s events, walks, webinars,
- open days at medical facilities, and
- many people in our community sharing their HAE stories on multiple platforms, including social media, magazines, and television.
“It is always impressive to see the innovative ways our community steps up to raise awareness of HAE around our global awareness day,” says Henrik Balle Boysen, Executive Vice President & CCO, HAEi. “When we think we might have seen it all, our Member Organizations surprise and inspire us again.”
Our annual activity challenge saw participants regularly undertake and add activities – physical and wellbeing – to the hae day :-) website. The steps generated by the activities added between 1 April and 31 May created a virtual walk that took us around the world 2.8 times.
“The HAE awareness day provides a global opportunity to use the power of advocacy to positively influence the situation for all people with HAE. Every year I’m in awe of what we achieve when we come together. We truly are one family”, says Anthony J. Castaldo, President & CEO, HAEi.
Since the first hae day :-) in 2012 we have generated a total of 554 mill steps; starting with 12 mill in 2012, a 10th-anniversary record of 169 mill in 2021 to 146 mill this year!
>> Head to haeday.org to see more images and the results of the challenge!
“hae day :-) is a good opportunity to continue to raise awareness about HAE all over the world, and in Spain, we have tried to do our part again this year: with group walks, a get-together with young patients and their parents, and a press release! Every little bit helps.”
“With hae day :-) we feel we are not alone. We are motivated to celebrate the day and use it to raise awareness in the general public and share our HAE experiences with other patients.”
“More than ten years ago hae day :-) for HAE patients in Macedonia meant a sun on the horizon, a new hope that things would change for the better in their country. Little did they know, but their lives would be divided into a period before and after hae day :-) 2012. From that day, they became patient advocates and hae day :-) became a celebration of awakening the full potential of HAE patients in our country with the prospect of them becoming patient advocates.”
“hae day :-) serves to create awareness and
unity among patients. This year in Chile, many people sent their photos in support of the awareness day; they feel supported and united with other sister countries. It is a great activity.”
“The annual event helps a lot. Above all to make people understand that we are not only people with HAE, but we are active people who make ourselves visible and help each other to improve our own lives and the lives of our children. It is also important for doctors to have their value and work on angioedema recognized. In short, hae day :-), gives a voice to all of us!”
“hae day :-) also allows us to gather and involve our patients of the Association, motivating them to participate and carry out activities for the awareness day. This year for hae day :-) we launched the story ‘Motivating Lives – Hereditary Angioedema’, which allowed us to raise awareness about HAE by carrying out virtual and face-to-face activities to reach more families (kids and parents).”
“hae day :-) motivates us to continue improving the quality of our patients’ lives and unites us more every day with very important expressions and feelings: ‘We are not alone’, ‘We are not invisible’, and ‘We are all united for the same reason’. It is beautiful to come together, share experiences about when we have swelled, and work together to win the battle against HAE. We are stronger together and know that we will soon have skills and tools to make us stronger still. We will be successful as that is the reason our Association exists, to make life better for people with HAE in Venezuela.
hae day :-) makes HAE stand out. It shows the world that we exist and are fighting to have our place on this beautiful planet.”
“We are a group of HAE patients small in number and big in heart.
For us, hae day :-) is a focus to come together as a family – adults and children with HAE – to share a positive and life-enriching experience. As well as participate in the activity challenge as a group!”
