Held in Riga on 9–10 June, the workshop brought National Mirror Group experts, researchers, clinicians and policymakers together to exchange practical lessons on how national rare disease registries can better support research and alignment across countries.
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 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.
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.
