This year’s weekend event featured patient education, discussions, lectures, and workshops led by experts, as well as sporting and creative activities for HAE juniors. In line with the theme “Stronger than HAE Through Sports,” we focused on the positive impact of exercise and sports on the physical and mental health of children and youth with HAE. The HAE Junior 2026 family educational camp took place from May 1 to 3 at the Medličky Guesthouse in the Vysočina Region, Czech Republic.
Our special guests were Dr Radana Zachová from the Institute of Immunology at the 2nd Faculty of Medicine, Charles University, and Michal Rutkowski from Poland, the president of HAE Poland and the regional HAEi representative. Dr Zachová presented the latest updates in clinical guidelines for the management of HAE in pediatric patients, while Michal Rutkowski provided an overview of the State of Management of HAE in Central Eastern Europe. Other lectures and workshops addressed recommendations for safe sports participation for children and youth with HAE and other topics.
The caregivers of HAE juniors appreciated the unique opportunity to share their personal experiences and recommendations regarding HAE with other participants, who came from different parts of the Czech Republic.
The highlight of the juniors programme was the now-traditional HAEro Games — a popular competition featuring several athletic, creative, and knowledge-based disciplines for HAE juniors. They also practised outdoor survival skills and first aid simulations in case of injury. All competitors received well-deserved trophies and certificates. We carefully recorded the steps and results on haeday.org, where the global awareness challenge #active4HAE is still ongoing. We are glad that our active participation contributed to the effort to set a new world record in this annual challenge, organised by HAE International.
Children and adults then joined forces in the evening creative workshop “Vision Board,” tied to the theme “Stronger Than HAE Through Sports,” and in the “Sports for Everybody” workshop.
Last but not least, we distributed printed copies of the educational flyer for children and adolescents, “HAE and Anxiety”, and theCzech translations of the brochure “The Rare Boy at a Race”. These materials are also available digitally in the Infocentre section of our website.
We would like to extend our heartfelt tHAEnks to all HAE Junior and supporters whose contributions helped us organise this year’s Family Educational Camp (in alphabetical order): AMGEN, Astria Therapeutics, CSL Behring, KalVista, Lékárna.cz, ČEZ Foundation, Pharvaris, Association for Plasmapheresis, Swixx BioPharma, Takeda Czech Republic. Our gratitude also goes towards our many individual donors.
You can send your financial donation also to our bank account 2001782429/2010.
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