From President Jovana Cvetkovic Lazic, HAE Serbia
In order to celebrate hae day :-) 2022, HAE Serbia hosted the first in-person event in two years. This event was organized as a conference, where both HAE specialists and HAE Serbia were able to present. It was covered by all major media outlets in Serbia with more than 30 releases. The conference was attended by patients and their family members, representatives of other rare disease patient associations, representatives from RFZO (the Republic Health Insurance Fund), and of the Center for Rare Diseases at the University Clinical Centre of Serbia. The speakers were Dr. Sladjana Andrejevic, an HAE expert from the University Clinical Centre of Serbia, Dr. Gordana Petrovic from the Institute for Medical Care of Mother and Child of Serbia ‘Dr Vukan Cupic’, and myself.
I presented the results of a survey on the quality of life of HAE patients in Serbia, which was carried out by HAE Serbia prior to the awareness day. This survey allowed us to gather valuable and helpful information in an effort to improve the quality of life of patients with HAE.
We also organized a meeting that gathered patients from different cities and regions of the country where they could talk to HAE specialists, exchange experiences, and get all the necessary information.
Lastly, to raise HAE awareness, multiple landmarks in Serbia’s capital, Belgrade, and the cities of Nis and Novi Sad were illuminated in purple for hae day :-) 2022.
