It has been almost two and a half years since the idea of the HAEi Youngsters Community was officially launched at the 2018 HAE Global Conference in Vienna, Austria. However, young HAE patients have been connecting online and staying in touch long before that.
“At HAE International we are happy to be able to support the work of our youngsters and watch them constantly come up with interesting new ideas, projects and activities”, says Operations Manager Nevena Tsutsumanova.
The current HAEi Youngsters Advisory Group consists of seven people: Anna from Brazil, Facundo from Argentina, Nathan from Ecuador, Hana from South Africa, Nanna fra Denmark, Eirini from Greece, and Isabel from the United States of America. This group has been working on a couple of upcoming projects launching soon.
“One in particular is the HAEi Youngsters Online meetups – a virtual meeting place where young HAE patients can meet and discuss different topics such as, HAE, sports, social interactions, school, and friendships. This has been a very passionate project for the advisory group, especially now and as they like to say: “We need to be innovative and find new ways to stay connected, show support for each other and grow as a community.” Another project that is very close to their hearts right now is the Graduation project, that was launched on 1 June”, says Nevena Tsutsumanova:
“If you are graduating from school, high school or university this year, you have probably had a different experience than what you would have imagined. However, we are sure it was still an amazing experience that you got to celebrate with friends and family. Therefore, the HAEi Youngsters Advisory Group ask youngsters from around the globe to send an email to email@example.com or a message via the social media channels, with photos or videos of your graduation so we can celebrate you.”
If you are a young HAE patient or care giver, between the age of 15 and 25 years old, make sure to keep an eye out on the HAEi Youngsters Community website, join the HAEi Youngsters’ Facebook Group and or follow the HAEi Youngsters’ Instagram for more information about the online meetups and other fun activities.