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.
This year's programme offered learning experiences, sporting and educational activities – including the favourite 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 travelling 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 "A Rare Boy and the Talking Balloon."
The juniors enjoyed a rich programme 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.
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.