From HAE Junior

HAE juniors’ families joined the fourth educational summer camp. The fourth edition of the HAE Junior’s summer camp is successfully over! Let’s take a look back at the four days we spent together with HAE children & teenagers from all corners of the Czech Republic.

A variety of educational, sporting, and experiential activities. This year’s program offered learning experiences, sporting, and educational activities – including the favorite HAEro Games – as well as expert lectures and group discussions on topics that are currently relevant for HAE patients. Important updates and valuable know-how were shared, among others, by Radana Zachová, MD, from the Department of Immunology at the University Hospital in Motol, Michal Rutkowski, Vice President of HAE International, and René Brečťan, Vice President of the Czech Association for Rare Diseases.

There was a high interest in topics such as the development of HAE awareness in the Czech Republic, access to orphan drugs legislation, and patient
advocacy. Parents of HAE juniors also appreciated practical tips and recommendations on traveling with HAE, healthy diet and lifestyle, and so on.

In addition, the participants were offered the latest printed leaflets, “HAE and travel”, posters for health professionals, or the Czech translation of the children’s story “The Rare Boy and the Talkative Little Balloon”.

The 4th HAEro Games have their winners. The juniors enjoyed a rich program that tested their knowledge, as well as creative and sporting skills & talents. What they liked the best was the conversation and workshop with paramedics who visited us by ambulance and the traditional multidisciplinary HAEro Games competition, which became the highlight of the stay.  As every year, the participants received their well-deserved prizes – HAEroic cups and diplomas.

Acknowledgments and tHAEnks! We want to say tHAEnk you to all the speakers, participants, and partners whose contributions enabled us to hold the educational family camp in 2023. The event was financially supported by the following partners: CSL Behring, Takeda, KalVista, Pharming, Sdružení pro plazmaferézu, Amberplasma, and other individual donors.