Workshop "Achieving a better quality of life for people with rare diseases"

14. 9. 2022

Rare diseases – one of the priority topics of the current Czech Presidency of the Council of the EU – have now a unique opportunity to receive wider public attention. 

Therefore, on October 5th, our patient organization – together with ČAVO and the Department of Immunology, 2nd Faculty of Medicine, Charles University and Motol University Hospital – will host an international online workshop on improving the quality of life of people with rare diseases. The project is to take place under the auspices of the Minister for European Affairs Mikuláš Bek within the Czech Presidency of the Council of the European Union.

The workshop aims to highlight the importance of the quality of life of patients with rare diseases, its significance and role in the overall care of these patients, and to present some examples of measuring and improving the quality of life both in the Czech Republic and abroad. Czech and foreign experts in immunology, as well as representatives of Czech patient organizations are going to join the workshop.

For maximum accessibility, the lectures, recorded beforehand, will be available in English with Czech subtitles. 

For more information, visit the event website:

Project partners are CSL Behring, Pharming NV, KalVista Pharmaceuticals,, Takeda, ExCEED Orphan, Patient Worthy and Meditorial+. This online event is endorsed by Eurordis and ERN-RITA.


HAE Junior non-profit organisation
Wichterlova 2372/8, 
Prague 8, 182 00
Organisation ID 08749787
704 007 717

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