MARCH 2021 perspectives HAEi MAGAZINE · ISSUE 1/2021 93 Member countries NEW APP! HAE TRACKR BY PATIENTS FOR PATIENTS 18 LAUNCH OF THE THIRD HAEi 10 YEAR ANNIVERSARY OF VIRTUAL REGIONAL WORKSHOP GLOBAL HAE AWARENESS DAY 14 – NOW IN LATIN AMERICA 23 perspectives Global Perspectives Issue 1/2021 March 2021 Cover photo HAEi Youngsters visiting the National Civil Rights Museum during the 2019 Global HAE youth advocacy workshop in Atlanta, USA. Magazine staff Henrik Balle Boysen, Executive Vice President & Chief Operating Officer Rikke Sørensen, Communication Design and Graphics Manager Steen Bjerre, Communications Manager Subscription If you would like to subscribe to our magazine, please send an email to
[email protected] or register directly at haei.org HAEi 2021 activities are supported by HAEi is registered as a non-profit organization in USA HAEi is a global non-profit umbrella organization dedicated to working with a network of national HAE member organizations to raise awareness of HAE GLOBAL PERSPECTIVES · MARCH 2021 ⎮ 03 DEAR HAE INTERNATIONAL FRIENDS, Welcome to the first 2021 edition ofGlobal Importantly, TrackR strictly protects patient Perspectives. The extraordinary spirit and “can do” privacy, is EU-GDPR compliant, and enables data attitude of our global community remains evident sharing with a physician. We will announce the as HAEi member organizations continue to TrackR rollout on our social media platforms make remarkable progress, despite the ongoing within the next several weeks. challenges posed by COVID-19 restrictions. Also, as you will read in the pages that follow, Survey data we have gathered over the years our Regional Patient Advocates (RPAs) continue reveals a critical need for significant improvement to implement HAEi’s vision of a decentralized in emergency room care for people with HAE.