HAE juniors raising  awareness among Czech & EU lawmakers

6. 10. 2022

During the first October week, our HAE juniors have been raising awareness about HAE in the Czech Parliament, as well as the European Parliament in Strasbourg. At both venues, pictures by HAE juniors were on display to inform about the rare disorder HAE and about rare patient priorities. 

On Tuesday, 4th October, the opening ceremony of the Stronger than HAE exhibition took place in the presence of members of the Czech parliament, patient families, doctors, partners and other HAE Junior friends. Drawings and pictures, depicting the dreams of a better future for the smallest HAE patients and their friends, will be on display in the Parliament until 21st October 2022.

On Wednesday, 5th October, a reception marking the 10th International Plasma Awareness Week (IPAW) was held at the European Parliament building in Strasbourg. Blood plasma donation is of great importance (not only) for HAE patients, as it is used to produce some types of HAE medication. The event organizers therefore expressed interest in presenting a few drawings by our HAE juniors at this reception at the European Parliament in Strasbourg.

HAE Junior would also like to tHAEnk all the young artists and the partners of the exhibition: 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©.

Contact:

HAE Junior non-profit organisation
Wichterlova 2372/8, 
Prague 8, 182 00
Organisation ID 08749787

info@haejunior.cz
704 007 717

Contact for journalists:
media@haejunior.cz

Media kit download
 

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