Sweden has adopted its first national strategy for rare health conditions, aiming to improve coordination, equity and access to care between 2026 and 2030.
The European Commission has opened a Call for Evidence on the upcoming Biotech Act II — with feedback open until 10 June 2026, inviting stakeholders to submit input that will help shape the initiative before a legislative proposal is prepared.
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.
The Czech Republic has adopted a new national strategy for rare diseases, setting priorities for coordinated, patient-centred care and stronger integration with European initiatives over the next decade.
Taking place at a pivotal moment – with the European Rare Disease Plan expected to move forward significantly during 2026 – the meetings brought together National Mirror Group (NMG) representatives from Europe and beyond, alongside European Commission stakeholders, IRDiRC and international partners.
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.
A legislative own initiative file in the Parliament’s new public health committee sets out what an EU “rare disease action framework” could look like — and why it could change how Europe measures progress for patients.
