HomeERDERA interview with Bojana Mirosavljevic, rare disease patient advocate from Serbia and founder and president of Život/Life.
Mar
13
2026
ERDERA interview with Bojana Mirosavljevic, rare disease patient advocate from Serbia and founder and president of Život/Life.
A rare disease patient advocate reflects on Zoya’s Law, early diagnosis, and why patients are a crucial stakeholder in research, policy, and national rare disease systems.
Bringing together policy makers, researchers and data experts to align on how registry data can better support rare disease research and evidence‑based policy across Europe.
The session will introduce the workstream’s activities in data sharing, systematic diagnostic reanalysis, advanced diagnostic pipelines, and genomic and multi-omics innovation.
Bringing clinicians, researchers, patient representatives and families together, the event examined how shorter diagnostic pathways depend not only on better tests, but on shared expertise, structured phenotyping and patient-centred support.
ERDERA and the European Genomic Data Infrastructure have signed a Memorandum of Understanding to strengthen collaboration on secure cross-border access to genomic, clinical and other health-related data, supporting rare disease research and the development of personalised medicine in Europe.
