Database of Rare Diseases
The fact that about 30 percent of doctors in Serbia do not know enough English to be able to use it for professional medical purposes, and that even 60 percent of people suffering from rare diseases do not know enough English to be able to get information – encouraged us to take action.
After the adoption of Zoja’s Law, which from 2015 until now has helped to find a diagnosis for thousands of children and was presented at the United Nations, the European Parliament and dozens of professional meetings, Bojana Mirosavljević, Zoja’s mother and her citizens’ association for rare diseases in children “Life” started a new challenge.
LAUNCHED MAGAZINE
The Provincial Health Secretariat also supported the Rare Disease Database project
THE BEGINNING OF CREATION
As one of the winners of the action "Programmers for People of Novi Sad", organized by the company "Vega IT" from Novi Sad, the citizens' association for the fight against rare diseases in children "Life" started the realization of a great work.
TRANSLATION & ORPHANET
With the help of the NIS company, funds were provided for the translation of part of the professional medical content from the English language from the Orphanet database of rare diseases.
"WORD FOR LIFE"
"Word for life" becomes the winner of the big European annual award "Black Pearl" awarded by the European Organization for Rare Diseases - EURORDIS.
The Ministry of Labour, Employment, Veterans and Social Affairs supported the Rare Diseases Database project and continued publication of the magazine "Life".
RETRO DIGITAL AGENCY HELP
The team is joined by Retro Digital Agency, whose team members have a built-in sentiment towards the topic of rare diseases.
COOPERATION OF THE ENTIRE REGION
The project is expanding to the entire Balkan region
SIGNING OF THE MEMORANDUM
Signing of memorandums of cooperation with national organizations of Serbia, Montenegro, Croatia, Bosnia and Herzegovina and Macedonia.
RARE DISEASES DATABASE STARTS WITH WORK
The database of rare diseases is a unique regional project whose goal is to shorten the time to diagnosis and provide broad support to patients suffering from rare diseases.
PRVA REGIONALNA KONFERENCIJA BAZA RETKIH BOLESTI 2020
25.11.2020. okupila relevantne sagovornike iz celog regiona na temu retkih bolesti i značaju umrežavanja kako lekara, tako pacijenata i udruženja pacijenata. Konferenciju otvorile Bojana Mirosavljević, koordinator projekta i Tamara Vučić.
II REGIONAL CONFERENCE OF RARE DISEASES DATABASE 2021
TOPICS:
- Equal aspects of social protection of persons with rare diseases
- Neonatal screening for rare diseases in the Balkans: experiences and perspectives
- Orphanet Rare Disease Knowledge Base
- Patient Support Webinar: Introducing the Drug Development and Clinical Research Process
III REGIONAL CONFERENCE OF RARE DISEASES DATABASE 2022
- Republic Fund for Health Insurance - Sanja Radojević Škodrić -
- Cal Research Initiative - Helen Hernandez
- European Organization for Rare Diseases (EURODIS) - Francois Houyez -
- Alternate member of the EMA Pediatric Committee representing the patient organization,
- University of Gdańsk - Tomasz Grybek -
- President of the National Alliance for Rare Diseases of Romania, member of the EURODIS Executive Board -Dorica Dan -
- Agency for Medicines and Medical Devices of Serbia (ALIMS) - Jadranka Mirković
- Panel 1 -
- Panel 2 -
- Aftermovie - III Regional Conference on Rare Diseases 2022 -