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 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.
Young advocates met in Paris from 23–25 April 2026 for the second ERDERA Training for Young Advocates for Rare Diseases, focused on advocacy, clinical research, patient rights and partnership in paediatric rare disease research.
Preliminary results point interest across the rare disease research community, while highlighting underrepresentation of some countries and stakeholders
