By Deborah Corcoran, Chief, Special Projects and Research
Throughout April and May 2023, our global community organized an incredible number of HAE events and activities with hae day :-) – May 16 – as a focus. Member Organizations arranged patient days, family days, walking and hiking events, virtual patient days, educational events for doctors, and much more.
“Our voices are one of the most powerful advocacy tools we have,” says Henrik Balle Boysen, Executive Vice President, and Chief Operating Officer, HAEi. “It is wonderful to see so many of our community sharing their HAE stories on social media, in magazines, and in television interviews for hae day :-)”.
Participants in our annual activity challenge added their time spent on physical and well-being activities to our hae day :-) website. Between 1 April and 31 May, the steps generated took us around the world a record 3.5 times! Well done, everyone!
“hae day :-) gives us a focus for advocacy activity and an opportunity to celebrate our global community. We are continually inspired by the positive difference our community makes for people with HAE – it is advocacy in action!” says Anthony J Castaldo, President, and Chief Executive Officer, HAEi.
Hear it from the Member Organizations taking part:
“Over 10 years ago, back in 2012 hae day :-) was the day when the story of HAE patients in our country started, and therefore it means a lot to HAE patients from Macedonia. It was a day that helped shape our actions, it became clear to us what we were supposed to do to make medications available in Macedonia and put us on our paths for a better future.”
“hae day :-) is a great occasion for patients, caregivers and physicians to share experience and feel as a big family! Having a dedicated day is very helpful as we can share the news in our social pages and also organized dedicated events in our specialized Angioedema centers where patients but also physicians from other specialties have the opportunity to learn what’s new in HAE’s world.”
“hae day :-) is a symbol of hope and solidarity, reminding us that we are not alone in our journey. It serves as a powerful platform to foster a sense of community, encouraging individuals with HAE to share their experiences, challenges, and triumphs. hae day :-) serves as a rallying point for advocacy efforts, enabling us to call for change and improvements in the lives of those affected by HAE.”
“hae day :-) is a day that unites the entire HAE community worldwide, to publicize the HAE and allows us to have greater visibility in society. hae day :-) reminds us that we are part of a community and motivates patients and families to continue in search of a better quality of life.”
“hae day :-) is a day for HAE community to come together, share experiences and raise awareness. This is a way for us to understand that we are not alone and that we can live a completely normal life.”
“hae day :-) means renewing plans to spread awareness, thinking more about how we can reach potential patients with information and uniting more with already diagnosed patients to talk and exchange our experiences and know that we are not alone and that we have associations that are working for the best quality of life for all patients.”
Image gallery from the activity challenge
