Update from HAEi’s Executive Vice President Global Operations and Chief Compliance Officer, Jørn Schultz-Boysen
It feels like only moments since I last updated you in the second edition of the Global Perspectives magazine last year. Back then, I talked about the preparations for and hosting the 2023 HAEi Regional Conference EMEA in Munich, Germany. This time, it will be another conference that took much of the team’s time and effort to plan and execute, the 2024 HAEi Regional Conference Americas, which took place in Panama City, Panama, from 15-17 March 2024.
I now echo much of what I said then: the team’s effort to get such a great event planned, prepared, and executed. That goes for handling travel grants and registrations, booking flight tickets, preparing the three tracks (patient/caregiver, youngsters, and scientific), all the materials needed for the conference (stage, program, hand-outs, etc.), the conference app with personalized information per participant and the Wordly app to secure online, real-time translation of the conference, post-conference survey (we are working hard on learning from the surveys and preparing the overview), and not least running the show with the right presentations at the right time. All this helped ensure the conference was the biggest success possible with the highest impact for all participants.
It was a fantastic conference, and the early survey results indicate this, too.
The Panama conference concluded the first round of three Regional Conferences: Bangkok in March 2023 for the APAC region with more than 200 participants, Munich in September 2023 for the EMEA region with around 650 participants, and Panama for the Americas region with another 650 participants. Hosting a conference like this every six months is a massive task for the team, and a big shout-out goes to everyone who makes these conferences so successful.
Even more so, it is incredibly satisfying to gather 1500 patients/caregivers, healthcare professionals, and pharma representatives to make a real difference. The impact of the three conferences can be read in the survey feedback. The motivation every single participant took home was to continue the fight to raise awareness of HAE and improve the lives of people with HAE. And this is the mission for many more people than could participate in the conferences.
We now look ahead to the 2024 Global Leadership Workshop (GLW), held in Copenhagen, Denmark, from 3-6 October 2024. The Workshop will be for Board Members and key people involved in the -currently- 99 Member Organization’s activities. In addition, we are enhancing the Scientific program by transforming the Scientific track into an HAEi / ACARE co-sponsored event, the Global Angioedema Forum 2024 (GAF). Industry supporters will also join us for the GLW and GAF and host exhibition spaces to share HAE-related information.
And let us not forget our current hae day :-) campaign. Our annual highlight brings our global community together to celebrate our network and each country’s remarkable initiatives. It is heartening to see everyone’s participation on the haeday.org platform – every story and picture shared celebrates our journey and contributes to our mission of raising HAE awareness.
Here and on haei.org, you can discover and learn a lot more about the resources we offer:
As a Member Organization, whether you need a hosted website, an online, GDPR-compliant, and safe membership database (HAEi Connect), or skills to help with advocacy and to run your Organization (HAEi Advocacy Academy), you will find more information on our website.
As a patient or caregiver, you can access the Understanding HAE and Women with HAE guides, learn about the youngsters’ community, and perhaps dive deeper into the LEAP educational program. If you want to take control of your HAE, the HAE TrackR app is for you. A personalized, GDPR-compliant diary to record your treatments – and to share your data with your doctor – it is an app built for patients by patients. And finally, the HAE Companion app gives you the HAEi Emergency card on your smartphone for more than 80 countries, including directions to the nearest hospital that can help you.
For all of the above, please contact your Regional Patient Advocate to know more or get started.
In celebrating hae day :-) and embracing the full span of activities through April and May, we are reminded that every step we take is a stride toward a better future for everyone affected by HAE. Here is to a successful hae day :-) and a year filled with groundbreaking steps and transformative LEAPs!
