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 interviews Bojana Mirosavljevic, scientist and founder of the Život/Life association in Serbia; and one of the country’s leading voices rare disease patient advocacy.
ERDERA interviews Prof. Radka Kaneva and Dr Petia Stratieva, two leading members of Bulgaria’s National Mirror Group (NMG), to explore how the country is working to align its rare disease ecosystem with European developments.
ERDERA joins the Wilhelm Foundation and the Gdansk Medical University and Clinical Centre to strengthen phenotype‑led diagnosis for people living with undiagnosed conditions
The two-day event will focus on translating research and policy initiatives into tangible benefits for Rare Disease patients through better prevention, diagnosis, and treatment.
Drawing on Europe-wide patient and carer surveys, ERDERA highlights how gender can shape diagnostic delays, care burden and the evidence base for rare-disease research.
European Parliament research service assessment, published in February 2026, identifies 31 measures that could form an EU rare disease action plan, highlighting European Reference Networks and cross-border collaboration including ERDERA as drivers of EU added value.
This meeting will focus on practical approaches to phenotyping and diagnosis in undiagnosed conditions, including how to define next steps when a diagnosis remains uncertain, and how to strengthen pathways and collaboration around undiagnosed care.
In its first year, ERDERA has brought together 10 000 harmonised genomic and phenotypic datasets from unsolved rare disease cases across Europe, creating a secure, standardised and scalable resource.
