The fact that about 30% of doctors in Serbia do not know enough English to be able to use it for professional medical purposes, and that as many as 60% of patients with rare diseases do not know enough English to be able to get information - prompted us to action.
After the adoption of "Zojas law" in 2015, which has so far helped find a diagnosis for over 2,000 children, and was presented at the United Nations, the European Parliament and 44 professional meetings, Bojana Mirosavljevic, Zojas mother and her Association of citizens for rare diseases "Life" started a new challenge.
As one of the winners of the action: "Developers for Novi Sad", organized by the company Vega IT from Novi Sad, the Association of citizens for the fight against rare diseases "Life" has started the realization of a big job.
With the help of the company NIS, funds have been provided for the professional translation of content from the English language of the ORPHANet database of rare diseases.
The Provincial Secretariat for Health supported the Rare Diseases Database project. With the help of their funds, the magazine "Word for life" was launched.
Word for life" becomes the winner of the big annual Black Pearl award given by the European Organization for Rare Diseases EURORDIS.
The Ministry of Labor, Employment, Veterans and Social Affairs supported the project Rare Diseases Database and the continued publication of the magazine "Life".
The team is joined by the Retro Digital Agency, whose team members have built sentiment towards the topic of rare diseases.
The project is spreading to the entire Balkan region.
SIGNING OF THE MEMORANDUM
The Rare Diseases Database is a unique regional project aimed at shortening the time to diagnosis and providing broad support to patients suffering from rare diseases.x
11/25/2020 brought together relevant interlocutors from across the region on the topic of rare diseases and the importance of networking of both physicians and patients and patient associations. The conference was opened by Bojana Mirosavljević, project coordinator and Tamara Vučić.