Between 3rd and 21st October, 2022, our drawing exhibition themed "Stronger than HAE", featuring pictures by HAE juniors and their friends, will be on display on the premises of the Chamber of Deputies of the Parliament of the Czech Republic. Thus, the drawings and paintings created by these little artists will be seen by Czech politicians who decide on legislation related to the treatment of rare diseases in the Czech Republic. The exhibition is held under the auspices of Mrs. Markéta Pekarová Adamová – president of the Chamber of Deputies of the Parliament of the Czech Republic.
We have selected both older and newer drawings of children and teenagers with HAE up to 18 years old & their friends from the Czech Republic and abroad. Many tHAEnks to all juniors who responded to our call for artwork submission!
The drawings reflect recurring patterns, including dreams and wishes for a bright future, as well as the desire and motivation to live a full life despite the unpredictable disease. In addition to the artworks, panels with accompanying texts with further information about the exhibition, the disease and HAE Junior patient organization will be installed.
The event is going to take place during the Czech Presidency of the Council of the EU, with rare diseases being one of the agenda priorities.
Project partners are: Czech Rare Disease Association, Department of Immunology of the 2nd Faculty of Medicine at Charles University and Motol University Hospital, CSL Behring, Pharming NV, KalVista Pharmaceuticals, Takeda, Lekarna.cz, ExCEEd Orphan, the Association for Plasmapheresis, Patient Worthy©.